#5 You only get less than the average face time of 5 minutes per visit

#4 It takes over 10 minutes non stop talking to explain all your symptoms

#3 He/she says...... I thought it was a kiddie disease!

#2 He/she says.....do you really think you can follow that diet??

#1 There is only ONE restroom in the office!!!

#6 - They ask you how to spell celiac.

Nancy

Um, how about this - - your primary care doctor (who THANK GOD referred you to a wonderful GI for serious anemia and internal bleeding) says

"what is gluten? what is it in?"

I broke up with her.

(1) When you finally get up the nerve to tell your doc about your embarassing symptoms of gas, bloating, constipation and excruciating gut pain, she tells you "Oh, that's just IBS". Everybody your age gets IBS."

(2) When you ask how to treat IBS, she hands you a diet sheet which recommends you eat more fiber, but especially WHEAT bran.

(3) When you follow her 'IBS' diet sheet suggestions and your symptoms get WORSE, not better, she says, "You'll have to learn to live with it. There's nothing else we can do."

(4) Your doctor wants to test you for all the diseases for which you have no risk factors (like breast cancer, heart disease, etc.), but can't explain or resolve your excruciating gut pain symptoms.

(5) Your doctor tells you that you're perfectly healthy according to your physical exam and test results.

When your family doctor looks at you like "oh no! not diareah lady again!"
When your GI doctor who gave you your DX says "oh don't worry its not genetic"

When your doctor says you are the second patient he has diagnosed with coeliac. (A bit reminiscent of the midwife telling me that my son was her first delivery, so I confessed he was my first baby too!)

Cathy

When you figure out gluten is a problem ON YOUR OWN through an elimination diet, and you go to the Dr for a celiac blood test, and she says, "You don't have diarrhea. You can't have celiac disease unless you have diarrhea."

When the blood test comes back negative and the Dr says, "See, I told you so. You have IBS. Let me give you a prescription."

When you insist that gluten is the problem, due to dietary response, and she says, "You don't want to be on a gluten-free diet. It's impossible."

How about when the doctor tries to describe Celiac disease my comparing it to a reaction to poison oak! Totally insulted my intelligence. I never try to flaunt my degree but I had to in order to get him to stop talking to me like a child!

When they tell you that Celiac disease is not a spotty disease relative to intestinal biopsies. Every case he had ever seen had a positive biopsy. (Go figure. )

If the biopsy is negative then the highly positive blood tests were wrong--go home and order pizza.

First of all--Ann, how funny is it that you started this thread

Mine was when I started requesting tests and asking about too amny things she just didn't know about.

My doctor was a lovely person, but after I figured out that I might have a "problem with wheat" from an alternative practioner, checked it out with a gastroenterologist, and was finally diagnosed--I told her and she kind of raised her eyebrows and said "did it relieve your symptoms?"

Or when the doctor directs you to the internet for information.
That really was good advise, as this is where I met all of you wonderful people.
Cathy

When you go to the doctor because you are extremely dizzy, nauseated, bad diarrhea, extremely low blood pressure and heart palpitations and she takes your pulse and says it seems fine...take some dramamine for the nausea and don't move suddenly. Huh?

Ann, you are bust-a-gut funny! First, the fact that you started this thread -- which proves that you are the type of physician EVERYONE wants. Second, the reasons are great!

I have one: When the neurologist says, "Well, everything I've read indicates that your antigliadin levels will ALWAYS be elevated, and there is no reason to further check them." When everything he's read has come from articles that YOU supplied and they all indicate that the levels should be checked every 6 months!!!

P.S.: I got "fired" from his office because, after an extremely frustrating 5 minutes with him, he asked me what my neurolopsychological profile said. He doesn't even KNOW what it is! It is a functional test that shows which portion(s) of your brain aren't operating properly. I told him that it said that I have Occulomotor Apraxia, and that my "Minnesota Multiphasic Personality Inventory" was well within normal limits, with a mild increased concentration on a chronic medical condition. I also told him since that test was taken two years ago, I no longer have an increased concentration because, quite frankly, I couldn't give a rat's "arse" if I ever saw another doctor again. Two weeks later, I received a notice that I had a registered letter at the post-office --- from him! Typically, that means, in the words of Donald Trump, "You're Fired."!!!!!

Having my GI tell me at my first visit with him I wonder why my partners had you come to me I have only diagnosed 70% of the Celiac patients in his office so I guess that makes me the expert of Celiacs in the office. I told him that I didn't know who I wanted I just wanted an appointment. And if you did have anything I would want you to have IBS that can be controlled with meds.

Having my GI also tell me that being gluten-free would not make a differnce in the test

Having my GI not here me when I say 3 months he heres 3 weeks.

Having my Family Doctor not know what Celiac is I don't blame him for that, but he said I don't think that I have heard of that but I will sure look it up, because he would like to know, for future referance. I ought to ask him the next time someone in the family goes.

Donna

How about the ever famous answer of "It's a female thing". Followed in a close second to "It's all in yuor head. Here's a prescription for Prozac." Yeah I'm sure that Prozac is just gonna make me happy that I have lower right abdominal pain, weight loss, diarrhea, gas, bloating, more weight loss, and chronic anemia.

We should start a list of favorite quotes from relatives and doctors!

Hey -- my OB/GYN gave me Prozac when I told him that I felt like I was sitting on golf balls!!! Come to find out, I had my bladder and my rectum both distended and pushing into the vaginal walls, and my uterus had dropped to the point that it was coming out (literally). No wonder the Prozac didn't make me feel better!!!!!!!

Lynne
ouch!!! thats gotta hurt.

donna

Glad you liked it,Patti!! I am not always a "patient" patient !!

haha you all need new doctors lol

How about when the dermatologist (whom you've begged to do bloodwork) says that your blood work is perfectly normal--and your IgG is 64 (and normal is under 16 at that lab)?

Ah, wasn't bad, just uncomfortable. Couldn't figure out why I felt so weird. Then to be given Prozac for it????

It wasn't until my first Women's Health continuing education course (you'd know that each one is a WEEK long instead of a weekend) that I found out what was wrong with me. I am the type person who had a pap every 18 months, just so I didn't have to go in as often! My boss asked me to be the liaison for this course. I was working for a larger corporation, and to do this would give me more "visibility", according to her. PLUS, I'd get the course and my lodging for free. So, without doing my homework, I said "Sure." Then, the day before I was supposed to leave, my co-worker and friend said "You know, you are the LAST person I thought would take this course." I said, "Why'd you say that?" She said, "Because of the lab." I said, "Lab? What Lab? How can you have a lab when you are learning . . . OH NO." She started howling laughing. She said, "You didn't READ what you were getting yourself into???!!!!! You don't even go to the gynecologist like you should!!! You're going to spend one entire week practicing on each other!!!!!!!" I thought I was going to die.

It only got worse when the instructor started naming symptoms, and asked us to raise our hand if we had any that she would name. Of course, ALL of the girls in there were 20-something, none with kids, so here I am 38 years old, two kids, both difficult births, and answering in my head "yes" to all these questions!! When we get to the lab portion, the two young girls I was working with said, "OH MY GOSH. Should we get the instructor?" I knew then I was in trouble. They asked if I wanted a mirror, and I said, "Why not." The instructor came over and asked me if I had answered yes to any of the questions. I told her all of them. THAT was how I found out all those things were wrong.

What I found after that? The way that a LOT of women find out about things like that are in the Physical Therapist's office -- one that specializes in Women's Health. There are a lot of women in Louisville who are on Prozac, etc., for a problem that is NOT in their head.

Your doctor tells you that you're perfectly healthy according to your physical exam and test results. This may be the most aggravating answer I have gotten too. If I am so normal and in the normal range, then why was I so sick and why do I feel so bad now. I just had an endo tell me that my numbers all fall into the normal range and, "You are extremely high risk for thyroid disease, come back in one yr for another checkup." Some of them have no clue.

Then there is the doctor I went to last year, named Kevin. When I told him I have celiac disease, he says, "I know all about celiac disease, my son has it, he can't have barley." At that point, I felt bad for his son. Dr. Kevin had no clue about celiac, not really, which is very sad--his own son was diagnosed with it and he didn't read up on it. How sad is that?

Or when I heard a very well known celiac nutritionist tell a celiac, "You can wear any make-up, it doesn't matter, you are not eating it!" Yes, when the same person asked me something, I also explained to her about being very careful with make-up.

There is so much ignorance out there and yes, I do expect it from people, but not from doctors, especially when celiac disease/gluten intolerance is so much in the news now.

Upon your first visit to this doctor; never having had a prescription for anything from this doctor (prior prescription from this facility was that they gave "Colace" to someone with non-stop diarrhea!). You're sick, scared, exhausted, weak and desperately wanting to feel better; you ask for what is state of the art in those days (lower barium GI series - meaning thru rectum test) and the GI accuses you of only being there to get drugs "You junkies are all alike. You only come here for drugs!" You respond to Dr. Jerk, "I don't want any prescription drugs! What kind of a nut do you think I am asking fo a barium enema?" You leave the facility without test or prescriptions and realize you need a new non-Govt Issued doctor.

1977 East Orange Veteran's Hospital (no wonder Walter Reade Hospital has been found to be unfit)

When your GI DR. says he(my son) can't have celiac as he doesn't look malnutritioned even after reports of a high blood test(154) 4 years previous(and a neg biopsy) and being high risk w/ having down syndrome and yes he did have a distended stomach.

Good thing he accidently found it w/ a scope alongwith gastritis and a hiatal hernia.

At least I had a son and not a daughter so they could not sayit was allin his head because of hormonal issues.

Karol

Hi my favoritte one is when the doctor looks at you and tells you: Is all in your head.

Thanks for starting the thread.

Best regards everyone.

This is funny!

How about when a hemotologist tells you 'you're a woman, women get anemia. As soon are you get through menopause your anemia will go away' and you're only 43 at the time.....and have not started menopause yet?!!!

Also, my dx'ing GI told me 'you can still eat rice, corn and potatoes and hung up' - literally. I fired him that minute though he didn't know it until he got my letter explaining a few things to him about the gluten free diet and how NOT to treat future patients who had it.

On the flip side my pcp was honest to say she was told she'd never see a patient with Celiac but now she has serveral with it. Her assistant called the other day and asked if I'd ever heard of someone being misdx'd with MS when they actually had Celiac (she pronounced it selliac) and I said YES!!!!!!!!!!!!

She also asked why so many people were being dx'd with Celiac (again pronouncing is incorrectly though I corrected her the first time). I reminded her that I'd told my doctor this was coming over a year ago. Sometimes people just don't listen unless they are hit over the head.

When your Heart Dr say's it not a big deal it just causes a little more diareah than usual I started to give a lesson on Celiac but he did't have time so I never went back to him. I thought he might think a heart that wasnt beating right would't be any thing to worry about.

i tell ya where do some of those doctors get there licance from? a cracker jack box lol

Yeah where do you find a G.I. doctor in toronto ontario. who doesn't look at you like its all in your head. Before I got diagnosed last yr, I had gone to the emerg three times before that with chest pains and stomach pains, on the third time they admitted me for six days, and a week later the G.I. who did the scope, called to tell me that I might have celiac disease, but would be confirmed by getting a blood test done, well on my last visit almost a week ago, he said well sort of there is nothing more for him to do, see you in yr. what no more with him perhaps its time to find another one who knows more about this disease. ok bye from leewendy

My GI told me to eat wheat toast with some butter on it before my fat absorpsion test (keep in mind he'd diagnosed my celiac the year before). I gave him a funny look, he repeated himself, again emphasizing WHEAT. Then he suggested maybe some whole wheat pasta if I wasn't into toast....
needless to say when I move next month I'm going to find a GI who knows something (ANYTHING!) about celiac around Phoenix!

How about this one

I the midst of major allergic reaction to Synthroid (BP is 188/92, resting pulse is 110 normally 68) Full edema and massive hives.

Phone conversation with Nurse Practioner:
Her: "You have Hives?"

Me: "Yes, Hives H-I-V-E-S, you know Uticaria? Allergic Reaction?

Her: "Well, that's just dry skin"

Me: No, it started the day after I started the Synthroid and has gotten progessively worse"

Her: "Well, it could be an allergic reaction, but that is very rare"

Me: "So I guess that means it can't be true!"

I scheduled an appointment with the doctor who took one look at my vitals and said "I don't like you on this medicine, we have to get you off, Now!"

I will not go back to said nurse pract. again., but I love the Dr.

First he told me I had lactose Intolerance, which he had, too. Funny, going off dairy made me L.Intol. Since then, I've gotten back on it.
Then he said my back pain was from slouching and to do more situps (I was aerobics queen as it was)...plus then I'd look at my fat, slouching husband and wonder how his back didn't hurt...????
I begged for the bloodtest and the Dr. INSISTED that I go gluten free to see a dietary response and then if I felt better he'd do the blood test.
When my IgA or whatever levels were "elevated but not enough to diagnose". I said, "What do I do?" He said, keep on a gluten free diet!
btw
Every time I went in he'd say "I think I have that, too". I think they teach them to say that to show compassion. But I can tell it's BS. When he sent in my bloodwork he sent his own in to test his levels, supposedly. what a dork.

My doctors have some gems:
- We found what is causing you the pain! It's an ovarian cyst! (But my pain is 8 inches above my ovary!)

- It's just stress induced constipation. Take stool softeners every day and you'll be fine. Some people just get constipated (I hadn't had a bowel movement in 2 1/2 weeks and the xray showed poop throughout my intestines)

- Just keep taking the stool softeners (when I told them that eating pasta and bread made me sick and how miserable I was traveling in Paris and Italy-- how much obvious can it be!! The big problems always started during the last weeks of school where I was eating pizza and drinking beer and I was joking about how I had C going into D after my pasta binge! AND I HAVE A FAMILY HISTORY (In my defense, I didn't know what Celiac meant)!!)

- You have no antibodies, so it isn't gluten (1. no one in my family has antibodies. 2. He told me 4 months before the test they told me that "if it makes you sick, don't eat it", so I had not had anything with obvious wheat in it. 3. I had a wonderful dietary response in the week between when my blood was drawn and when I got it back)

Grrr-- Doctors are not my favorite people. I understand why the med school machine causes this, but I hate how clueless some are.

When my oldest DD was 2yrs. we took here in to the gi dr. and ran some tests. because of stomic pain. I thought her reflux was flaring up again. She was born with a alsuer also. My mom went and took her to her follow up appt. and the gi clinic scured up her referal and did not let her be seen with the doc. I was 7 mths pregnent with my middle DD and dicided not to have a fight to get her in again. Takes at lest 3 mths to be seen at this ped gi. I Thought they would have called if anything was wrong with any of the testing. Fast forward five years and Emily was getting worse again. Got a pointment with the same gi doc. She came in and ask if Emily had ever been seen by her and I said yes when she was 2. "did I do testing on her?" Yes I said. She went out and was back with in 10 mins and said that she tested positive for celiacs and we need to retest her. I was so ticked off I could have spit nails. Thats when I gave up on DR.s and dont trust them at all. Well Emily's test came back even more positive then before and we set up a biopies, biopy day and I asked the dr to get at least 10 biopies of the small intestince and she look at me like I was crazy and she said one will do just fine. ha ha ha. biopy came back neg. wonder why. Then the doc said that Emily can eat gluten because she did not have the damige to her villa. I told her she had no qlue of what she was doing and a positive blood work means that you have problems with gluten and I am going to put her on a gluten free diet. The doc was so shocked and said I could do it but she dought that it would help her much. It has been almost a year and Emily has not have the poblems she had and now is in her weight group for the first time in her life. Yea it did not help her out. lol. Now my sisters kids are going to see her now and I told her just get the blood work done and be done with that doc. There are only 3 ped gi docs in okc and they are all in the same office. sucks.
Jodele

When your doctor YELLS at you, saying that you must go on antidepressants because the stress and anxiety of not having a diagnosis is making the symptoms worse.

(I said, "Well why don't we figure out what IS wrong with me. I am pretty sure the stress of not knowing will probably go away then.)

Since the diagnosis she refuses to answer my phone calls or see me. Her assistant informed me that any and all questions I had must be directed to the GI specialist... even if they have nothing to do with GI issues.

I would formally and in writing fire this doctor. I would be very specific about your treatment by her and I would also send copies of the letter to the head of whatever medical group or hospital she is affilated with. Make sure you get full copies of ALL your records from her ASAP (you have a legal right to them and don't let them try to tell you that you don't, you may have to pay a copy charge, and let your new doctor know what happened.

Boy she sounds like a "gem."

One GI told my husband he has an obsession with food and needs psychological help....(this was prior to celiac diagnosis, and we're still struggling with IBS issues and noticing that certain foods bothered him - foods like fruits/vegetables/spices -not gluten but it certainly foreshadowed an intolerance that the GI should have picked up on).


And here's a good one:

Your GP gets angry because your ob/gyn specialists notices that you have a lump in your thyroid and gives you a "script" to get a blood test so that it's done before you go to your GP (to save time, etc.). The GP comes down with "professional envy" and then decides not to allow you to get a nuclear scan of the thyroid just now ( to see if the growth is a hot or cold nodule (cancer). At this point, you fire the GP.

When the doctor tells you that you have Celiac Disease then his next sentence is....It's ok though to still eat whatever you want. If you get sick it doesn't matter just don't eat for a little bit and you'll be o.k. What sad, is b/c he was my doctor and I had never hear the word gluten before that visit, I continuted eating "whatever" for the next 5 years.

Think I need a new doctor!?!...... :-)

My doctor today said "I don't think that I can help you."

I said "Then there is no reason to be here."

And I walked out.

Luckily I don't need a new doctor because my GP and GI both told me that I was "fine" after not listening to a word that I said. I was so "fine" that they refused to run any tests or even do a thorough exam. I guess that means I'm okay, right? Well, aside from the pain, bloating, gas, loss of coordination, etc.

I was also sent to the internet for information... had no idea what to eat those first few days. Got a great start here at celiac .com

When a top children's hospital in Texas misdiagnoses you for 3 years with Lupus and insist that the meds. help you when they dont. So then your frustrated mom spends countless hours looking up your symptoms just so the doctor can tell her that I dont have enough of the "commom" symptoms for Celiac. I guess telling them "eating one Goldfish cracker makes me have D." wasnt enough evidence to show that I cant have gluten!!

It took my primary care doctor to diagnose me, when he thought he was doing the right thing sending me to the specialist.

Doctor #1- An internist. I'm 45 and the doc is a woman a bit older. I go in complaining of bloating and "bathroom" problems, with several symptoms of ovarian cancer and wondering why I feel so bad. She poo-poos me but pokes me and does a blood test for ovarian cancer, which is negative. Tells me I'm just overweight (I am, by about 25 pounds) and to go away. Of course, if she had really cared, she might have asked me my other symptoms and diagnosed celiac. A year later I got really sick and had stomach pain, so she did refer me for an endoscopy for an ulcer. That was the only good thing she did.

Doctor #2 - A GI specialist set up to do my biopsy. He was great because he didn't see any evidence of celiac (and wasn't told to look) but he took small intestine samples. No blunting villi BUT there was cellular evidence of an immune response, so he said to eliminate wheat & gluten. Sent me to a dietician. On the followup where I told him how much better I felt and how quickly, he diagnosed celiac. HOWEVER, he told me that since I had a "mild" case, I didn't have to be as careful with CC and could occasionally cheat. So, in the end, a dud.

Doctor #3 - Another internist, a woman in her 30s. I wanted a better doctor, so I went to her on a recommendation from a family member. I told her I felt better after the celiac diagnosis/gluten elimination but still crummy and, based on symptoms and research, I wanted to be tested for autoimmune thyroid problems. She refused, saying that I had no symptoms and all I needed was my TSH tested and I argued with her. She snarkily commented that "not everything you read on the internet is correct" and I argued back that what I read is PubMed, and I also am an intelligent person and expect to be treated correctly and with dignity. I fired her and am seeing a naturopath next week.

Doctor #4 - My long-time OB/GYN who also had the opportunity to diagnose me based on sypmtoms 2-5 years ago. Yesterday when I saw her, she was interested in the celiac and asked what my sypmtoms had been. I told her and stated that that was why I was worried about ovarian cancer and there is some overlap in the symptoms. She sarcastically said, "EVERYONE is worried about ovarian cancer!" HELLO of course we are when CNN or some other media says "IF you have bloating, gas etc. etc. ask your doctor to ckeck for ovarian cancer". And some women do have it. Why she was so defensive I don't know, except maybe because I pointed out that there were symptoms of celiac over 4 years ago. I didn't blame her explicitly but... there you go.

Doctor #5 - My son's Pediatric GI. Talking about my diagnosis, he tells me that without total villious blunting, many doctors would have said that I don't have celiac. Yeah, and since I went off gluten in February, who's to say that by now or next year I wouldn't have been even more sick and by then I would have shown totally "gone" villi due to more gluten damage? Do they really expect someone to have to get so sick before they diagnose? The one good thing that he told me is that even though the insurance company won't pay for my son's gene test until all other test options (i.e. EGD) have been exhausted that I should get MY gene test done and paid for by insurance to see if I "really" have celiac. So I will, but even if I don't have the gene, I would never go back on gluten. But it's a good idea and will help me help my son, even if the doctors won't.

You know the most frustrating thing is that without all you guys, I would feel so alone. The docs make me feel abandoned and unsupported, which is not a good thing - I'm sure you'll all agree - when you're faced with serious illness. I'm happy that I don't have cancer or diabetes but those diseases at least get you some concern from doctors.

The nurse repeatedly says to the phsycian, "Oh, my she's so skinny. Can you believe how skinny she is?"

(I'm almost in tears.)

The physician replies, "She's fine."

"The diet is expensive."


(I'd like to go back and tell the physician I'm not eating Immodium AD like candy, so I'm saving a lot of money.)

I read all these and have heard 90% of them from my doctors that I have seen.

When I finally got my diagnosis I saw a dietitian who said she had heard of celiac disease and gave me the Whole Foods list of Gluten Free Products from SPRING 2001! It was only one page long at that point!

Um, I had already picked up the zillion page list updated May 2007!

I called my advisor and changed my major to Nutrition Sciences and I want to become a RD with a specialty in Celiac Disease and other food intolerances.


Haven't found a good doctor yet, even my allergist who diagnosed me and has Celiac himself just said "It's a meat and potatoes diet, eat meat and potatoes."

When I got my enterolab results he diagnosed me over the phone through his nurse, and told me that they didn't do follow ups for celiac disease. I was thinking, you have it yourself, you should know how hard this is for me.


UGH.

My first post after registering is a rant about my frustration with my doc over in the false negatives thread, so I won't repeat it here.

My golly, these docs we're writing about all use the same lines! "I don't believe in..." "Here, take a pill, to sleep better..." My max out was that despite 1) reporting a ton of symptoms for 2 years and 2) then reporting massive improvement when I quit eating wheat, my doc kept doing a lupus test on me, because I do my own yard work & am in the sun, so have an age spot on the bridge of my nose. I'd say, I can't sleep, I'm ravenous, I can't think, I hurt and he would look at that 1/3" age spot on the bridge of my nose and order yet one more lupus test, which never came back positive, ever.

So: he refused to hear me, and chose to focus on a spot. I got one of those microdermabrasion kits at Walmart and microdermed the spot off.

Off topic, but the wackiest thing I've ever been told by a board certified physician is that a lump under my arm was an air bubble.

All i can say is WOW!!! i'm reading these posts and relating so much, i went in to my family dr. last summer with a rash (2006) i was told i picked something up from camping, went back in 3 weeks later as the rash didn't go away, i was told my husband must be giving me something from his work, got more predisone, was back in 3 weeks with the rash still...i was told then, it's something from camping again, got a cream that didn't really work. I went to see my ob/gyn, told twice by her she didn't no what it was, but treated me for a yeast infection..then i put up with the rash for another few months. I go back into my family dr. this July, still with rash, aching legs, feet, head fog real bad, dizzy, nauseated, was told i have vertigo and put on an antibiotic which didn't do a darn thing but make my D worse. I go back in 2 weeks later still with all the symptoms, was told, its a virus. SOOOOO i take it upon myself to see a dermatologist, was put on dapsone for 3 weeks, return visit was told its DH. was put on a gluten-free diet and more dapsone and my rash is almost gone and i feel soo much better.

OHHH and when i told my family dr. it was DH, he said hmmmmm i'm curious to see if thats what you really have, he said he doubted it, as i would be sicker than i was! I said ummmm i've been really sick for a long time, he said no you would be sicker than that..oh my, how much sicker can you get is what i thought. but this thread made me giggle, going to see a gastro dr. on Oct.15th, can't wait for that one

I just had lunch with a group that included a pediatrician who told me that his step-mom has Celiac, then proceeded to tell me about all the great spelt bread I could get...

This is the scariest thread I've ever read

My baby had rectal prolapse. Our family doctor wanted to just arrange a surgery, without even trying to find out why he was having that problem! I had looked online, and found that Toby had all the symptoms of cystic fibrosis. I insisted on an appt. with a ped. gastro. at our local children's hospital.

Toby was tested for cystic fibrosis, twice. He doesn't have it. The ped. gastro. consulted with the pulmonologist, and between them they decided it was asthma + celiac disease.

During that same time period, my 8 year old was suffering from horrible constipation and acid reflux. We took him to the family doctor, who wasn't in that day so we saw his partner. Thankfully the other doctor has celiac disease himself, and actually knows what he's doing! He sent us to the lab for testing, it showed a slight positive. We had all 4 boys tested, and they had nearly identical results!

We went gluten-free, Toby never had another rectal prolapse, Nate's constipation and reflux were cured (and he started growing again), Jonas's autistic behaviors and learning disabilities disappeared, he now 'only' has ADHD, and Henry's lifelong potbelly is gone.

I had friends on a parenting message board who told me to insist on seeing experts, and not quitting until I had real answers with lab results to back it up. They said parents have to fight for proper care. I'm glad I got that good advice.