Hi There,

I have been lurking around here for about a week, since my diagnosis. I have had anemia since I was five and now, twenty three years later finally have a great PCP and GI doctor who did the tests and diagnosis (biopsies and blood tests positive). This was mainly because I'm of childbearing age and my anemia is so bad I could not carry a child if I wanted to at this point. I have gone completely off gluten since last friday and I am just really cranky and I am not a cranky person. I can not really talk about this at home, and I need to just say this out loud.

I tried to talk to friends (who are, in every other way, very very supportive) and mostly what I've gotten is; Well you're not losing your hair (one friend is), Well you don't have cancer (one friend does), Well you have a great husband, Well you have a nice home, Well you have a good career. This just angers me to no end. I am not asking them to DO anything for me, except listen and know that I have this and I am well aware that I don't have cancer and that my life is very good - but this still sucks for right now. Both of my docs (PCP and GI) have given me the "attitude is everything" pep talk which I have found more than annoying - I find it insulting - it's only been a week - don't I get a little depressed time???? I am a social worker for pete's sake - I know attitude is everything - but so is feeling a little blue... it's only been a week people, if I'm still blue in a month, THEN give me the talk until then, leave me be!

I went to a nutritionist per my GI today who told me that I may be anorexic (though I have a BMI of 30+) because I'm so restricted in eating (which is both me being picky and getting used to this gluten free thing) and just wouldn't let it go and she told me that I can try wheat again in five years... yeah I don't know. It was the biggest waste of time and money - and she printed out the food list on CDF website and gave it to me! I did that! And I do have a ED history, and just randomly asking me if I have an ED is really not helpful and in fact was very upsetting - you are there to work with my Celiac... I had no real clue we had to talk about something 10 years in the past. (I admit that I could be very wrong about this, but it's a hot-button issue for me and it was very upsetting - if there is a good reason for discussing it, then I'm in the wrong and mea culpa).

And this whole thing about eating clean and being careful - people are acting like I'm making this up - I'm not!!! My GI told me "if you screw around on this, I will be treating you for cancer in ten years. Every single first-degree relative of yours has had or has cancer - you can not screw around with this, you get on the boat and you stay on the boat". Why would I challenge him? Why wouldn't I listen? More importantly why on earth would I make this up? My husband is great... truly great - I have nothing but kudos for him.

And... (my final rant, I promise) I am going through *terrible* gluten withdrawls. I am so much sicker now, a week after going gluten free than I ever was before the diagnosis. I was never sick and never felt bad - ever (though no one believes me) and my only symptom was enduring anemia that never cleared up with supplements for 23 years. That's it - just the anemia! Now, I have a headache, a fever, no appetite, my throat hurts, my whole body hurts so bad I could cry (and have) and I'm in a foul mood ALL THE TIME. I'm tired and so cranky and I don't want to see anyone, I don't want to go to school, I don't want to work... I just want to be with my dogs and lay on the couch. I don't even really know what it is I am mad about.... but I want to yell at everyone who tries to talk to me about this or tells me what they looked up, or how the doctor is wrong or how they gave up (animal products, meat, dairy) as a new years resolution and they did okay. This isn't a resolution! This is a lifestyle! This is not MY choice! I don't get a say! Grrrrrr!!!!!!

I have an appointment scheduled with my therapist - that will be good. Thank you for listening, you're all so kind to each other and newbies - so I hope it's okay that my first post was a long rant. I don't really need responses, I just have to say this - no one in my real life wants to hear it. I sound so pathetic, but it's really true - and I'm kind of bored of myself at this point.

I'm no expert, but it's understandable to be angry. And it's hard to see the positive side of something when it just changed your whole lifestyle and you had no say in it.
Nobody really understands except for someone who's been thru it. I was actually angrier before I started the diet. I really hated the way I acted, but it was like I had no control. I was amazed at how calm everyone seems here. When you are well it's easier to not sweat the small stuff.

I have slowly went from a processed food diet to home cooked meals. I already have a kid so I wanted her to eat healthy and not a lot of junk food, so I had to provide a good example. I did not experience gluten withdrawals, sorry can't offer advice on that.

Hang in there! It does help to talk about it.

Congrats on going gluten free! The change in diet can be physically challenging, and emotionally and psychologically very challenging as well



It's tough. It's true that it could be worse, but yeah, it could be better. Someone else having cancer doesn't make your broken leg hurt any less, though. For some reason, we all have to compare and figure out who wins the "I'm worse off" game. But we're all just in different situations. Better or worse doesn't matter, they're just different.



Attitude is everything, and some of attitude is accepting that there's a grieving process. Anger is a part of it. They're trying to help, and maybe just tucking what they into your pocket and pulling it out for use three weeks from now...



It is valid to bring it up. Anything that forces you to restrict your food again can cause concern for someone who's helping advise you about diet. It can cause a return of ED symptoms for people who are susceptible to it, so she may well have just been concerned that you were susceptible.



Why? Because more than half of celiacs do challenge it, and cheat on the diet. I wouldn't feel so upset that he took this stance, because he was just trying to be pre-emptive. Most people feel they can cheat, most people feel they don't have to be that restrictive. And given that he doesn't get to see you every week or two, he's hoping that your advice is going to stick with you six months from now when you're not in the same position as you are now.



It might not be gluten withdrawls. There is a flu going around in many areas (and your symptoms fit that), not to mention other viruses. It gets very easy to attribute everything to gluten one way or another, but it can often be other things.



It's hard to take people's attempts to be sympathetic and find commonality with you sometimes. But try to hold on to their intent, even if their words bother you. Find a way to move the conversation along, and realize that you are early in this, and dealing with these sorts of things is something that is learned, over months, and will take time to figure out how you want to deal with.



You're only six days into this; it's totally understandable. The learning curve for the factual/logical aspects is huge, and the adjustment curve for the emotional/psychological aspect is even bigger. It'll take time to go through the grieving process (and it's not like you only go through it once - it's cyclic) and it can be hard, even with people trying to be supportive. You'll get there - you WILL - even if it seems really hard right now.

I'm no physician, but did it ever occur to you that you might have THE FLU? If I were you, I'd just stay home on the couch with the dogs until I felt better!

Re the ditzy "Nutritionist:"

Uhm, ah, no, no, no, if you've been positively diagnosed by biopsy and blood test you don't want to "try wheat again in 5 years."

(where do they find these people and why are they paid money to do this?)

Re your emotions. Thanks for the warning not to give you the pep talk. I'll just skip that part.

Re your emotions part II. You sure sound like you're getting a combination of cross contaminated, carbohydrate withdrawals, low blood sugars and low calcium levels caused by malabsorbtion. If you are taking ibuprofen or birth control pills, that also can cause some of that from the side effects. You've been self medicating by eating carbs to boost your blood sugars up temporarily because your blood calcium is too low, and now you can't do that readily. If you don't start eating more protein and healthy fat like olive oil to compensate you will continue to feel like ****. Try some calcium supplements and a gluten free B vitamin supplement, they really help.

Don't use lipstick or shampoo with gluten. Both can be found with out it. Don't feed a dog food or a biscuit or let them lick your face unless you've got them on gluten free food, and wash your hands after handling dog foods or treats or petting them and then eating. I'm serious. I love animals but you need to channel any sort of compulsions into keeping yourself from getting dog biscuit crumbs into your mouth accidently. Cats lick themselves so much I would just put cats on gluten free food.

Wise doctor to do the carrot and stick routine because you will be surrounded by people who "just don't get it" and will try to get you to taste this and sip that because they... just don't get it. And people who don't get sick enough from gluten to motivate them to avoid it because of the intense discomfort will tend to slip up unless they know the joy of feeling really well compared to how they felt in glue land. Make friends with people with food allergies. They "get" it.

About the ED, yes, I have seen time and time again people who, instead of getting real strict about rooting out gluten, go crazy restricting more and more items out trying to feel better or trying to find the second culprit, usually dairy (can be temporary) or the third most common culprit, soy. So yes that's valid to ask and it's legitimate. We have a tendancy.

You could have the flu, too, that is going around. Happy Groundhog Day.

Now get back on the couch and recuperate.

Hurrah for you...you are fighting mad!!! that will make you very vigilant about what you should or should not eat...with celiac disease we have to be our own researcher and find what works for us..so glad you came on the board, stay with us and you will get a lot of good help here. & I did here 2 years ago after my DX and still do...had been having digestive problems for over 20 years, many of them/ debilitaing "D". Also have patience with yourself about not feeling better yet...for some of us it takes quite awhile if we have been sick a long time (my case too). My Dr. told me that Iwould feel worse before I felt better, at that time I was shocked but he was right. but now I am feeling so MUCH better, stronger and almost proud of myself since I am one of the oldest people on here and have gained back my lost weight. We also need to get thicker skin when around people who do not understand celiac disease!!! They can say such ridiculous things that will upset us no end!!!!
Sometimes I have felt it is better to just stay quiet and vent on the board or just with understnading people..it is so great when we meet even 1 person who understands this problem. Prayers for you. evie

Well, glad you stopped "lurking" I have felt all week I was being watched, now maybe it will stop

OK, back to the serious stuff for a bit......

Pity party all week if you want makes no difference to us, other than we want to help you get thru this and until you decide your ready for the long haul not much we can do but wait.... good thing we are a patient bunch OK well some are more patient than others but dont tell them I said so ok'ies

I agree the withdrawals stink (would have used a more colorful term but this is a family site ya know) to put it mildly but it too will pass it just takes time for your body to calm down a bit, right now its screaming for that doughnut you REFUSE to give it.

Anyways welcome aboard and get ready for a fight cause its an uphill battle the first few weeks learning everything, then remembering it for longer than 5 minutes

Thank you everybody for your kind words and thoughts and reality-check advise.

After I wrote all that, I picked a fight with the DH and went to bed. I woke up feeling much better (too bad for him though ) and am ready to start this process again.

I really appreciate all the sage advise - you really made my week. Thank you.

Ditto what the others have said. At this point I can't add anything very unique, so I'll just toss in my support along with everyone else's. Each time I've had to give up another food, I thought "how on earth can I do without?". Now I realize I was just blinded by my cultural upbringing. Take a good hard look at the typical American diet, and you'll see one of the most restrictive diets on the planet! It's like everything is made from wheat, cows, chickens and tomatoes.

Like the other replies that you have had, I'm no expert, and I'm only 1 month in to the gluten free lifestlye, but all i can say is hang in there.
From my limited experience it seems that the recovery rate is completely random, as some people seem to pick up and feel better as soon as the gluten stops, and others take much longer. I guess it depends on how much damage has been caused in the past.
In my case when I stopped eating gluten the difference was felt within days. I have had two accidental gluten slip ups in the last month, and been knocked back for 2 or 3 days afterwards. In many ways I'm glad this happened as it has reminded me just how bad I used to feel!
People aren't always understanding (as I've found out already) but remember this is about you. You'll have ups and downs and highs and lows, but in the long term you will feel better for it.
This weekend will be my second Six Nations Rugby weekend without beer (beloved Guinness!). For the last 20 Years the routine has been.... Get the family and friends round, get the beer out, the crisps, sandwiches etc and watch the rugby. Then have a party afterwards with pizza, sausage rolls, pies etc.
last weekend it really hit me. I could indulge in none of this! Family and friends joked with me, wound me up "go on just have one beer" etc but I didn't. And do you know what? Monday morning was the best Monday I have had for Years! Apart from the result of the game!
This weekend we are going to a friends house for the next round of matches and I'll probably have to bring my own food and drinks, but so be it! I might be cheered up if England can actually win a game this time!!
If you feel down, come on here. There's plenty of like minded people. cheers me up!

I'm 6 days in to my gluten-free experiment and have been mildly to partly cloudy all week (ok fine, I've been cranky), but I always get cranky when I food detox. This has been an enlightening week, I just wonder what the next week will bring.

Hi and welcome here from me as well. Tiffany made a good point there. One of my daughters has a mother-in-law with celiac disease, and she cheats whenever she feels like it and is willing to take the consequences (which in her opinion are just gastro symptoms that go away after a couple of days). I have tried telling her about long term consequences, but she doesn't want to hear it. She is a very nice person, and I really hope she won't die of cancer in about ten years or so. But unfortunately, there is a good possibility that she will.

If your anemia is that bad, you really need to have something done about it. Supplementing by mouth is useless at this point, until your villi regenerate and can actually absorb the iron. I suggest you see your doctor and ask him to give you iron injections to bring your iron up to normal. That will also make you feel better.

Also, you need to be tested for other deficiencies, like vitamin D, calcium, magnesium, B vitamins (especially B12), vitamin K. And have a bone scan done to check for osteoporosis (yes, even children with celiac disease can have it already).

If you are planning on having a baby, please don't try for at least six months, because you are right, your body can't support one right now, and it would just end in miscarriage.

I agree that it sounds like you might have the flu (very poor timing, obviously) on top of having withdrawal symptoms. Lying around and resting is really what you should be doing right now.

You have every right to be mourning your loss of gluten foods. Once you feel a little more balanced, you may want to take a look at what you still CAN eat, rather than what you can't.

Mind you, for the time being, you will be better off to start out with 'real' food, which is unprocessed, fresh food, which is naturally gluten-free. Like meat, vegetables, fruit. Many of us found that at first we had trouble with the gluten-free baked goods, as they are very hard to digest (not to mention being high in starch and sugar and very fattening).

Finally, go ahead and vent here any time you need to! It is very hard to find anybody who will just listen and be sympathetic, without giving unwanted advice and letting you know that you aren't so badly off, after all (what do they know!).

I hope you feel better soon.

Isnt that why they were placed on this earth, for us to vent on? oh yeah and to take out the trash

I had ( no Have!) the identical problem! Before being diagnosed with Celiac Sprue I was feeling good. No diarrhea or upset stomach. It was diagnosed via the throat scope into my intestines. I have total villious atrophy. My IGA was 250 and Igg was 4.1. My Dr. said 20. is the norm for both.
I had went in for a yearly checkup. I was severely anemic. Much to my surprise! I was in shock when Dr. called to inform me that I had Celiac disease. That was last November 28th. 2007.
When my husband came home I told him what the Dr. had said........ Hubby replied..... and shrugged. "well it could be worse!!!! It could be cancer! " That was just not what I needed to hear Most everyone I know doesn't think its anything very serious.
But when I think about it... its no wonder people can't understand. I never complained of not feeling well
Even though I have been diagnosed with fybromylgea about 4 years ago. I have learned thats pretty common with celiacs.
Well its February 9th now and at last I can feel a huge improvement ! This may sound strange, I have been totally unable to stand on my heels and raise my toes. I know how simple that must sound! But now I can!! Hoooooooray for meeeeee
I also suffer from extreme leg pain, constipation, depression, extreme acheing in my arms and legs, peeling lips , thinning hair...... all these things that I hadn't connected.
I still feel alone except for my Friends here, but I can feel improvement in my ambition.
So please don't be discouraged loco_ladi. Hugsssssss

I completely get the crankiness... I still get cranky when I think about it.

Here is my advice:

- cravings go away if you are completely gluten free. They are horrible for the first month. Especially the smell of pizza and brownies (I have been known to start crying at the smell of pizza). However, you will get through them and it gets easier

- the ED thing has some basis. Because food makes you sick, you need to control food now, just like how those with ED used food as a form of control. If you have risk factors for an ED then you are more likely to relapse when celiac gets hard and no matter what you do you are getting sick. I know you want to move on, but please keep the risk factors in the back of your head, because there is a correlation.

- friends don't get it. I have wonderful friends, but until you live with it, you don't get how much it changes your life. Having a great board like this helps, as does making them shop and cook with you (how I finally got my mom to get it)

- make a safe cabinet. on days that you have extreme PMS, a crappy day, or just really bad cravings having a stock of snickers and tostitos helps. They are not as good as the brownie you are craving, but it does help

- pack a thing of fritos or M&Ms in your purse. That way when your friends stop to get a snack you can eat too. That does make it easier

- find a great restaurant you can eat out at safely. That way when people want to go out or if you just need a night off you can go out and feel normal for a night.

Good luck!

you should find your local GIG group or celiac support group and GO! There are a ton of other people who have been through what you have, and seeing them face to face can help in addition to this forum.

I would like to add- brownies and cake freeze very well. Splurge, buy a mix, most people like the Gluten Free Pantry or Pamela's, make them, eat two, freeze the rest. Trust me, they come in handy.

I would like to really, really thank you for this post. I absolutely went through the same range of frustration and continue to but have been feeling like my frustration is unnecessary and something I'll just have to get over. It's really nice to have some one else voice the frustrations I have been experiencing. I have had the same experience with friends where they are very (for the most part) supportive and want to help but get annoyed when I get angry at my limitations telling me things could be worse. I think it's hard for those who aren't directly impacted to understand the full scope of things especially as they become apparent to you right after diagnosis. I actually realized that I went through the stages of grief after being diagnosed.

I can't really offer anything in the way of advice or anything but just know, it gets better, it gets to be a part of your routine. For me, my reaction vomiting extensively so it was perhaps a little easier to adjust because a few episodes nearly sent me to the hospital. I understand the anger though. Really, really I do. I just found this forum thing today and it has helped me already so much to see SO many others going through this and learning to cope. That in itself makes everything much easier to comprehend for me.

Good luck with everything. If you ever need to talk or anything let me know. Just understanding I think makes this so much easier.

Ariel

Its understandable to feel depressed at first, and its certainly not pathetic, when i was told there was even a possibility of having it i felt like crying.

Freinds just dont get us, they keep saying "oh well its not serious" and "if people can become vegetarian then you can become gluten-free" but its NOT our choice, so dont worry if they dont take you seriously or try to make out that their lives are better than yours. I even had one so called freind tell me it was all my fault that i was sick .Take them out with you and show them how much our food costs and how much you are now missing out on, thats how i got my freinds to understand. t first my mom wouldnt shut up about it, i used to feel like shouting at her everytime she mentioned it, i then started walking out of the room when i felt one of her rants coming on

Keep chocolate somewhere in the house, so when you need it you can just go get it, and take something really nice with you anywhere you go, so if everyone around you is eating you can eat too, ive found that this helps alot.

There arent any sites like this in the UK so im lucky i found this, we are all here for you and know how you feel

feel free to rant anytime..