I last posted a couple of weeks ago about my fiance Alex, who was having a pretty rough time with pneumonia and then colitis from the antibiotics. Fortunately she's off all the antibiotics now and doing quite a bit better.

We saw Alex's GI on Friday for a scheduled follow-up and he said that it was disappointing that she wasn't much better after almost four months of gluten free. She hasn't gained much weight back and is still needing weekly IV iron and B12 shots. He said he wanted to schedule Alex for a follow up endoscopy/biopsy to assess how much her villi have healed.

Is this necessary? Can it really tell us anything that we don't already know? She's doing better but not 100% so her villi are probably partly healed. I think if Alex hadn't gotten sick with pneumonia and all the complication that came with that she would have gotten better quicker. Is four months too long to still be having GI issues? It's not like we can do anything else -- we're completely gluten free. Maybe it's optimistic thinking, but now that Alex is healthy (besides the Celiac) I really think her recovery is gong to go much faster. She has been able to eat better within the last week and seems less pale to me.

Anyway, should we be worried that the GI is "disappointed" in Alex's recovery rate? Should we just go ahead and do the biopsy? On one hand it seems pointless but we certainly don't want to be negligent about Alex's health. Thanks

Ryan

Hi,

Just saw your post. First question is has Alex been keeping a log of exactly what she is eating? Are the GI symptoms exactly the same as pre-diagnosis? She may be getting gluten from a source other than meals. One common mistake is a person licking envelopes. This was mentioned during a talk last summer by one of the leading Celiac research doctors in the US. As far as a follow-up endo I would rather you checked the anti-body levels in the blood first. If they are still elevated then I would suspect she is still getting gluten from some source. The more naturally gluten free food she can eat (meats, fruits, veggies, etc), the less likely she could accidentally ingest gluten. Also soap, shampoo, touthpaste, etc. are candidates for gluten. Hope this helps.

Tom

Also I meant to suggest starting out with a very basic elimination diet to see if maybe she is sensitive to something other than gluten.

Tom

Thanks Tom, I appreciate the response. Alex and I have learned a lot about Celiac in the last few months but we still feel like we’re in over our heads most of the time. Alex is eating mainly bananas, applesauce, gluten-free toast and crackers, rice, mushy vegetables, and recently small amounts of soft chicken. Her symptoms are similar to pre-diagnosis but less severe. Before the diagnosis she was frequently throwing-up and had much more severe D (I think she was chronically dehydrated for over a month before the diagnosis ) but things aren’t as bad now. Her symptoms are improving, just not as quickly as we’d hoped. Thanks also for the info about the stamps; we weren’t aware of that.

Her GI said her Celiac panel was good. Don’t know any exact numbers though. We’re really torn on what to do about the biopsy. We’ll probably just go along with the doctor and do it even though we don’t want to. We’re not knowledgeable enough about Celiac to not just do everything he says. Her last endoscopy was a bad experience but mainly because she was very ill from still eating gluten so they had to spend a lot time dealing with her fever and dehydration before they did the scopes. And she wouldn’t need to go through the prep this time since it will only be an upper endoscopy and not colonoscopy. So maybe it won’t be so bad. I just can’t help feeling that all that will come of this is the doctor telling Alex that her villi still have a lot of healing to do and that she will be left feeling very dispirited. Oh well, I guess this is just another thing we’ll have to figure out.

Ryan

I think it's just plain too early, especially considering how ill she's been. Recovery time for adults is more like two years instead of just a few months. If you have seen some improvement I personally would choose to wait a bit longer before having any follow up testing. Especially if her antibodies have gone down, that's a good sign.

Glad to hear she's recovering from the pneumonia. I don't think i posted earlier in your thread but I was reading it and following her story.

Pauliina

I agree that it is a bit too early with everything else she has had going on. If you can put this off for a bit I would. She has been through a lot lately and IMHO needs some time to heal and relax.

I would drop the gluten free crackers and toast for a bit and go with naturally gluten-free foods, things like stews thickened with potato, soups, fruits etc. The main reason I say that is because some folks who have not had some of the ingredients that are used in gluten free specialty foods can have a hard time digesting them at first. It doesn't happen a lot but it can happen. She can add them back in after she is feeling better for a while.
An excellent tummy soother that is very high in protein and easy to digest is buckwheat. If you can find the Pocono brand I know that is grown in dedicated fields and processed in a nongluten facility. It makes a hot cereal that tastes a lot like cream of wheat, I throw in a large dose of cinnamon also if my tummy is troubled.
I am glad to hear that she is feeling better finally.

Considering how sick she still is, I think it IS worth it. This way, he can check for other problems. Also, if he finds that the damage has healed, and her bloodwork is normal---then it is indicative that something else is going on if she is still that sick. I, personally, would want to know sooner, rather than later. He's not disappointed in her...he's disappointed that the gluten free diet, at this point, hasn't led to a vast improvement in her symptoms. If you are gluten free, her biopsies end up normal, and her bloodwork is normal---something else IS going on.

I'm with you, Happy Girl....Better to go ahead and check it out. If Alex is getting weekly IV iron and B12,the gut absorption is being bypassed. Maybe also a consultation with a hematologist is in order...if not already done.

In the list of things that I read can prevent Celiacs from getting better the theme that keeps reoccurring is yeast overgrowth....maybe they can check that for her if nothing else. We truly help she feels better!!!!

On the one hand I agree with Happygirl that there could be something else going on, but on the other hand since she was recently so sick with pneumonia, that could have certainly slowed down recovery. Plus, four months is still early for a newly diagnosed celiac.

I would keep looking for the hidden gluten (like the envelopes). I, too,think it's a good idea to cut out the gluten-free toast and crackers for a while .... maybe switch to brown rice (you can cook a large batch, then just heat up a serving each time she wants it).

You had written about her taking probiotics, the yeast comment was a good one ... I'd be sure she's taking probiotics -- a good one and enough of it. Yeast overgrowth could be a very important piece of the puzzle, especially after her reaction to the antibiotics. Avoiding yeast might be a good idea, too. Both kifir and yogurt have yeast, the gluten-free bread most likely does, too. The bananas and applesauce can be contributing to a yeast overgrowth, too, as can any sugar. You might talk to her GI about a stronger probiotic like VSL#3 .... they want you to have a doctor's permission to take that one. Theralac is another good one that you don't need a doctor's recommendation for.

The scope is a hard call ... personally, I wouldn't rule it out, but I'd wait a couple weeks just because she was so sick recently. Maybe as she's healing more from that illness she'll put on a few pounds. If I remember correctly, she was hardly eating at all. If things don't get better, then see if there's something else going on ... many of us have other issues besides gluten.