Dad Confused With 2 Diagnosis-Celiac Or Crohns

[Confused-Dad-wdaughter]

First, thank goodness I found something like this. Second I will try to be concise and avoid rambling, but I guess its best to start at some background then the beginning.

Have twin daughters, one of them is 5 1/2 years old. Never had any health problems except stools. For as long as we can remember she always had "Soft, pasty," stools--never any form or normalality (Sp??)

My wife's family has a history of Celiac, so we started thinking that. We visited the Universtity Hospitals in Cleveland and a Ped GI. Did a bunch of tests, lab work, and everything under the sun, EXCEPT the scopes. And everything essentially came back NOT indicating that she was a Celiac, upon asking him why is her stool like this, he told us that some kids just have stools like this and that she will probably out grow it. So we carried on. (BTW one of my BIGGEST regrets).

2 years goes by, this spring around April, she starts vomitting occasionly, think something bad to eat, flu, virus, anything. But it continues, but with no regularity. Go back to same dip doctor and STILL tells us that he doesn't think its Celiac and will not do the scope---To say the least we went somewhere else.

Visited Cleveland Clinic, do lab work, stool samples, find out she is essentially mal-absorbing almost everything at this point and no real cause for vomitting. We get scope done pretty quickly. (sorry don't know all medical terms). But daughter has severe damage in ther bowels, mostly intestinal. But there is damage in two different areas, one where they typically see Celiac damage and the other where Crohns presents.

So we start Gluten Free diet immediately and strictly. Very tough for a five year old BTW. We do not see any improvements for almost 3 weeks. Dr, prescribes predisone at 6ml. See improvement almost in 3-4 days and within 10-14 days we saw as close to normal BM as we have ever seen. But side effects are tough, obsessiveness and bloating in face comes full force.

With improvement, we inform Dr, and they tell us to start weaning off of predisone, 1 ML a week, once we go to 4ML and eventually 3ML we essentially go back to square one. Full blown diahrea, soft stools, and 2 days of vomitting. Call Dr, and we go back to 5ML and come back in to office.

At office appt, tell us this is classic Crohns and very good chance she may NOT be a Celiac. Big questions in my mind.

They order additonal lab work, for levels to be able to prescibe Imuran. Obviously read good and bad about it everywhere I look. But curious if anyone has any history in small children???

We have heard about the diet, breaking the vicious cycle, but we had a difficult time with Gluten Free with a 5 year old, not sure how I could even get that one thru her.

So I feel I am stuck in between a rock and a hard place. Versus diet and medication, but not even sure if this is the right diagnosis. And don't feel like playing trial and error with my 5 year old.

Can anyone give me insight on the Celiac diagnosis? I know it falls under the IBD umbrella, is it all the same? or is there something else this may be? I don't want to start some crazy medicine for Crohns if that is not what it is. We just didnt see much improvement on gluten-free diet and from as best as I could tell we were and still are pretty strict.

We have limited almost all dairy except occasional ranch dressing for food dipping, not sure if that is still causing issues or what.

Not sure if we weaned off of the PRED too soon and we needed more time, but it was very unusual that her symptoms came back in full force after we had reduced dosage by about half and we increased again, but its like we started back at square 1 and it took 3 weeks to see improvement in ALL areas, energy, poops, belly pain, vomitting. Now we are back on higher dose of PRED and stomach pain is mostly gone and vomitting is gone as well.

I am sure I have millions of other questions, but I guess this is a good start. Any help would be greatly appreciated. There is nothing worse then a sick child and would move heaven and earth to get her feeling better.

I will look forward to discussion and try to promise not to be so wordy next time.

Thanks

Scott Kennedy

Dad of Crohns or Celiac--VERY Confused

[Dixiebell]

Sorry to hear you are having so many problems. Did she have an endoscopy? (thats the one when they go through the mouth.) Did the Dr do a biopsy of her small intestine, did he/she get samples to be sent to a lab? Do you have new cookware, cutting board, plastic spoons, and toaster for her. Gluten can get stuck in non-stick cookware and in plastic and wood. You might also want to take dairy away for a while until she heals a little longer. I would stay away from processed foods and feed her whole foods. It is very possible she could be reacting or be allergic to something else. I'm sure others will know more about crohns.

[tarnalberry]

I would also wonder if she was completely gluten free. Not getting any in school (including things like playing with playdoh or making things out of pasta), not getting any from a sibling/friend, and not getting any contamination at home (toasters, shared cutting boards, shared serving instruments, etc.).

3 weeks is not very long to master contamination issues, particularly with kids.

[GFinDC]

Prednisone and Imuran are immune system suppressants, so they could cause an improvement in both celiac and Crohns. Celiac and Crhon's are both auto-immune diseases so suppressing the immune system can help.

Typically though celiac can be controlled by diet alone. Often Crohn's patients use a combination of diet and medication. Some Crohn's patients follow the GFCFSF diet also.

There was a research paper posted a while back where a group did a study on supposedly naturally gluten free flours and found many of them were contaminated with gluten at fairly high levels. So gluten free baked goods may by a problem. So it would be best to avoid them for 6 months or so. For the gluten-free diet it really helps to make all your food at home from whole ingredients. Watch out for spice mixes and use single ingredient spices instead. Check all sodas, teas etc for gluten. Same with medications they need to be gluten free.

[sb2178]

The most depressing answer is that she could have both. Autoimmune diseases tend to "cluster" and leaving one untreated tends to increase the risk of others, I think I read.

Was any of her blood work indicative prior to the scope? Any antibodies specifically to gliadin? It's an older test, but the TTG antibodies definitely show up in both diseases so would be less reliable. If she had EMA present, that would mean it's definitely celiac (and may or may not also be Crohn's). If you have copies and can post, there are usually people who can help interpret.

Have you done a serious deep housecleaning? At 5, she's less likely then a 2 year old to eat a stray Cheerio from the couch or car seat, but there could still be crumbs or dust that is getting on her hands hiding under or in things. It may also be most effective to take the whole family gluten free-- just to reduce the effort of keeping her from eating the wrong thing. Have you had her sister tested? She could have silent celiac, and if sister does, then child #1 probably does.

Three weeks is pretty quick to be looking for clear answer - I didn't have intestinal damage on biopsy and it took me 10 days gluten-free to have semi-normal digestion and to be truly symptom free was probably 10 weeks. It's a nuisance, but I'd keep her on the diet longer. And, yeah, the first three weeks were absolutely miserable. Can only imagine they would be worse for a 5 yr old. Good luck!

[Skylark]

...ugh multiple posts as I tried to make the link readable...

[Skylark]

...ugh multiple posts as I tried to make the link readable...

[Skylark]

I'm so sorry your daughter is sick. It sounds like she is getting very good medical care if you're at a university hospital.

The response to prednisone rather than the gluten-free diet really does suggest Crohn's. It is true that celiac and Crohn's can appear together, and gluten is hard to digest with inflamed intestines. Trying a gluten-free diet is recommended for Crohn's anyway.

https://www.celiac.com/articles/915/1/Celiac-Disease-Prevalence-High-in-Patients-with-Crohns-Disease/Page1.html

I take it her celiac panel was negative? Did they see a really classic celiac biopsy in her small intestine with intraepithelial lymphocytes or villous crypting, or was it general inflammation? Has she been screened for the anti-bacterial and anti-yeast antibodies that often show up in Crohn's? Here's a pretty good article on markers for Crohn's and ulcerative colitis. It would be good if they can shore up the diagnosis with some of the Crohn's markers before they put her on a strong, immunosuppresive medicine.

Open Original Shared Link arti cles.com/?Blood-Tests-for-Colitis-and-Crohns-Disease:-an-Introduction&id=332954 (There are spaces in the URL because this board has had a problem with spambots from the site. Copy/paste and remove the extra spaces.)

Another thing you might want to consider is working with a dietitian who has experience with inflammatory bowel diseases. People with Crohn's respond to different diets. Some need low-residue, some do well on the Specific Carbohydrate diet, others need gluten-free/casein-free.

Hope this helps a lot.