Could There Be Something Else? (Long- Sorry)

[kvanrens1]

It has been a while since I posted.  Our daughter is doing great on the gluten-free diet.  We recently celebrated her two year anniversary of being gluten free.  

 

Just to catch you up on her history (sorry this is long).  She was diagnosed as growth hormone deficient when she was around 7 years old.  She was too underweight to start growth hormone treatment.  Endocrinologist suspected a food absorption issue so we were referred to ped GI. Endo did basic celiac panel (not full panel) in her initial testing and it was negative.  Ped GI put us on an aggressive eating schedule with pediasure supplements.  Feeding tube is suggest but I decline.  She gained weight but her stomach pain got worse and worse during this time.  She was diagnosed with mild pancreatic insufficiency (fat malabsorption).  Since pancreatic insufficiency is rare in children, they suspected cystic fibrosis.  She had a sweat test that was not a clear negative (borderline range) so she had a cystic fibrosis gene test which thankfully ruled out that diagnosis.  She starts missing school due to stomach aches.  She often curls up in a ball in school and home due to stomach pain.  She starts having behavior issues - grumpy, moody due to near constant pain.  She is on 4 GI medications (omnezeprole, creon, mirlax, periactin) at this point and nothing is working.  We switch Ped GI.  She has an MRI of her pancreas and all is normal.  Later, she has a upper GI scope that shows chronic gastritis and is negative for celiac disease and h.pylori.  Ped GI suggests it is "functional abdominal pain" but given evidence of pancreatic insufficiency, gastritis, constipation, and almost constant stomach aches, I did not accept that diagnosis.  One day I just googled all her diagnosis together (added the individual diagnosis together) and got celiac disease.  I know there is not medical basis their testing methods but I needed a piece of paper to show we needed to try a gluten-free diet for her and used Enter*lab testing.  Her numbers were very high for gluten sensitivity and she has DQ7 and DQ9 genes.

 

We put her on a gluten-free diet.  Within a couple of weeks, stomach aches were much better. Her mood improves.  We stopped the periactin. Constipation was better.  She gained a couple of pounds.  Within 5-6 months she was retested for pancreatic insufficiency.  No longer an issue so we were able to stop the creon.  We switch back to our original Ped GI.   He did not "believe" she could be gluten sensitive and suggested that we put her back on gluten to have her retested for celiac disease.  I declined.  At her next follow up appointment, he suggested that I put her back on gluten because she is still underweight (she is finally at a healthy level BMI for the first time in her life and at the 3% level on weight charts).  He said that I was omitting a food group without a medical reason to do so.  He gets very frustrated with me because I "seem to have all the answers."  He told us to call us if we needed to but did not schedule a follow up appointment.  So she is without a Ped GI at this point. 

 

After two years on the gluten free diet, we have seen so many positive changes.  She takes an OTC omnezeprole daily.  Stomach aches occur once or twice and week and are mild.  She still has occasional constipation, painful gas, and loud painful belches.  While she is finally at the 3% level on weight, her weight gain has tapered off and still a concern (10.75 years old and weighs 52 lbs).  She is adopted from China and I believe she is genetically going to be small.  We are very strict with the gluten-free diet.  We usually take food with us to restaurants.  I prepare her lunch and snack for school.   She knows how to read labels to look for wheat, rye, and barley.  She is also lactose sensitive so she is lactose free as well but we are a little lenient with the lactose free part.  We will let her have ice cream when she takes lactaid.  We try to only use the Kraft cheese that says 0g lactose or cheese that has 0g sugar. 

 

Since she is still having some GI issues, could there be something else still going on? I would have thought we could give up the acid reflux (gastritis) medicine at this point but the couple of times we have stopped it, her stomach pain and burping increases so we put her back on it.  Is there something we are missing?  Should we find another Ped GI?

[StephanieL]

I think I would start with eliminating all dairy. ALL of it in any form.  Usually a 2-3 week trial should give you an indicator if that is the issue. I'm not sure where I would go from there. I'm so sorry as it sounds like you have been through the wringer with this all.  I also hear you about the lack of a ped GI.  Right now we don't have one either. I ask our allergist or endo to run the Celiac tests every year or so because the GIs (several of them) we had was pretty much useless. 

[kvanrens1]

Thanks Stephanie.  That is a very good suggestion. I think that is where we should go next but the girl LOVES cheese in any and all forms. She will not be very happy. 

 

I have also been wondering about the FODMAPS diet.  I wonder if that would help her. 

[mamaw]

I too  think I  would  try  eliminate  dairy   to  see  if it  helps.....there are  many new good  alternatives  for  dairy......

Also  , I  would  immediately  put her  on  Digestive  enzymes ,  prebiotics, & probiotics ... Her  otc  med  is killing(depleting) off  any good  bacteria  she may have... we  need  good  flora  in the  gut..

After  a  dairy free trial  I would  suspect  intolerances  to other foods   (not  gluten-free only)...  other  things  can be  anything  like  corn, soy, msg, sulphites,

[mamaw]

I'm not  dairy free but  have  eaten  non dairy cheeses,  sour  cream  & so on  &  although  not  exactly a match they  are  pretty good...

Fodmaps   is  another  diet  restriction , another  is  MCAS.... both  are  worth  checking  out  but take one  at a time  so  you will see  what  works & what  doesn't.....

And  many  medical  people  say if  you love  or  crave a  certain  food   then  you  are  possibly  allergic  to it...

[cyclinglady]

She might not just be lactose intolerant but, like me, have whey and casein issues too which are also found in milk. Almost all Chinese people have lactose intolerance compared to Swedes (1 in 50).

Tip: Do not buy cheese subs as they often contain casein.

Milk can cause damage to the villi too (U of Chicago celiac website).

Hope she feels better soon.

[StephanieL]

We are gluten, dairy, egg, peanut and tree nut free (and some others but you get the picture ) What other sensitivities do you deal with? I can point you to some alternatives if she will lose it without subs for a few weeks. I will say that cheese subs really are an acquired taste and going from "real" to a sub in one day is tough. It wasn't for a month or two after we went off dairy before I was "okay" with it.  The ice-cream subs aren't bad.  There are a lot of dairy free alternatives for other stuff too as long as soy isn't something you are avoiding.

[kvanrens1]

Well, after having a discussion with her and her Dad, we (they) decided now was not the time to try eliminating all dairy.  It probably is the culprit.  We will restart the probiotics.  We had her on them the first year of being gluten free.  Compared to where we were, the gluten free diet has been nothing short of a miracle for her and us  

 

She says her stomach aches and other issues are not a big concern for her given how she felt before going gluten free.  If it gets to be a bigger issue, we will revisit.  Thanks for all your comments and suggestions!!!

[mommida]

As a parent of a child with Celiac and Eosinophilic Esophagitis, I would hope you can find a ped. gastro. to help her.  There can be other issues going on, as she is showing symptoms.  I hate to assume.*  Adopted from China?  No genetic family history?  No detailed health care history?  An endoscopy can be done to rule out or diagnose further issues, and give you a baseline for her health improvement.

 

Giving up dairy products seems hard at first, but it can be done.  (I would hope all testing would be completed at the point of an elimination diet.)  Finding foods that have a "creamy" texture was the key for us.  Avocado, humus, and Sunbutter and many other foods with that texture, are a great start.

 

Another stupid doctor suggesting to eat gluten!!!?  Ugh. 

[124chicksinger]

Have you tried the skin prick food allergy testing?  Its non-invasive and may shed further light.

 

I tested positive for rice, barley and oats, but not wheat, and also have negative celiac diag.  While voiding gluten, I'm also trying hard to limit my rice intake.  Had I not seen the allergist, I'd never have known it could be an issue.

[StephanieL]

Have you tried the skin prick food allergy testing?  Its non-invasive and may shed further light.

 

I tested positive for rice, barley and oats, but not wheat, and also have negative celiac diag.  While voiding gluten, I'm also trying hard to limit my rice intake.  Had I not seen the allergist, I'd never have known it could be an issue.

Allergy testing is notoriously not very accurate and it is NOT suggested in testing  whole bunch of things just to see what "sticks".  Unless there is a documented reaction (hives, vomiting, diarrhea, breathing issues, sneezing, wheezing and the like) from 20 minutes to 2 hours after ingesting a food, food allergy testing is NOT recommended. 

[124chicksinger]

Well I didn't know that allergy testing as you write is notoriously not very accurate and not suggested to see what "sticks."  Is it junk science?  Do you have a link to it being useless?

 

I went for myself as kind of a puzzle piece trying to put it all together with the issues I was having, and I do get hives, and rashes, and red feet, and tingly lips.  I was glad I went for the testing and saw what "stuck".  

 

He explained to me the different types of allergies and how they manifest, as gastric, skin reactions, anaphalactic, etc.  I found it worthwhile for myself.  I'll never suggest it again, however.  My mistake.  

[StephanieL]

The testing you are speaking of has a 50% rate of a false positives (false negative are very rare on the other hand). It isn't that it's junk so to speak it's just that there isn't anything better unfortunately.  This is why the recommendations from the AAAAI is NOT to test for things just because and only to do so when there is a known reaction.  I deal with multiple food allergies and have been at this for a while so I know this because I live it.  I'm sure if you want links you can google it.  Skin prick testing and blood testing is ONLY for IgE allergies which are the ones that are potentially anaphylactic.  The "tests" for intolerances are ever worse.