Who To Trust (Gastro Or Immuno)

[Brit1612]

Y'all have been so helpful on this forum..... and now I am back for more help.  I thought we were moving past some of the concerns and possibly ruling out celiac disease, BUT as you can see I am back.

 

The GI had "ruled out" celiac (this was our second opinion / she was much more knowledgeable).  We finally had ALL celiac bloodtest come back negative (including the ttg IgG that had previously been positive) along with negative endoscopy (multiple biopsies).  This was the first time in over a year that I considered the fact that he may actually NOT have celiac.  

 

So, yesterday we finally had our immunology appointment after having to wait 5 months to get it.  I thought the appointment was supposed to just be her explaining what it means to be "IGA deficient".  So I was completely shocked when she said that she feels he is celiac with or without any of the clinical proof.  She commented (just like everyone else) how complicating and confusing his symptoms and results have been.  She herself is an immunologist, but is also a celiac (as well as her kids).  She did some repeat blood-testing along with some additional test, then she is going to give me some more feedback.....

 

I am so confused.  Who do you trust; the GI or the immunologist?????  Is she leaning toward celiac just because of her own experience????

 

Also, I thought that my son was doing well ON the gluten (since starting the gluten challenge 4 months ago).  He has continued to gain weight at a pretty slow but steady pace.  When he was initially introduced to solid foods at 13 months he pretty much stopped growing completely.  Today I decided to go back through all the doctor's visits and plot his growth chart.  I was very suprised at what I saw......  Since being back on gluten the past 4 months he has followed the curve weight wise, but has not grown in height at all in about 5 months.  Am I over-analyzing this or is it significant????  The growth chart shows that he went from 50th % in the middle of our trial gluten free diet, to 17th% 5 months later (back eating gluten).  His gastro symptoms have actually seemed better after being back ON a gluten containing diet.  He went from loose stools daily, before going gluten free and after, to now (back on gluten) have some constipation mixed with occasional normal or loose stools.

 

Sorry this is so long again.....It is just so confusing and now I am at a point where I feel like we have to make a choice on which Dr to trust.  The immunologist also said she would be talking to his GI as well and discussing things (they work in the same office).  Thanks for any feedback!!!!

[cyclinglady]

I am sorry that this is so confusing for you, but I am glad you are still fighting for a correct diagnosis!

I would put my faith and trust in this immunologist and not because she and her kids have celiac disease (that is a bonus). I think (I am not a doctor or a scientist) that she knows how being IGA deficient and how it impacts celiac blood tests. Plus, she is willing to discuss it with the GI doctors.

Regarding your son's symptoms. I think that they wax and wane. celiac disease symptoms are never consistent. Twenty years ago, I had diarrhea, intestinal cramping, gas, etc. Figuring out some food intolerances, avoiding known allergens, and eating a healthier diet eliminated those symptoms. The only consistent symptom I had was life-long anemia. When I was diagnosed two years ago, that was pretty much my main symptom. Later I found that some anxiety, osteoporosis, and stomach pinching were related to celiac disease. Plus, even though I had a BM everyday, I did not realize that my intestinal transit time slowed down to about three days. That became apparent when I prepped for my colonoscopy.

So, you can not base anything on symptoms alone!

Keep us posted. Looking forward to input from others.

[nvsmom]

I would tend to go safe rather than sorry, and trust the inmmunologist.  

 

Low Iga is found in about 1 in 20 celiacs.  Low IgA in the regular population is about 1 in 700, so just having low IgA is sort of pointing to celiac disease.

 

Don't look at growth as a clue.  I was 95th percentile or higher my entire childhood and I am sure I had celiac disease since 4 months old, back when they used to introduce solids very early.  I remember asking to see a doctor when I was in grade 2 or 3 because of my stomach aches - I know I had it back then.  By grade 6 I was 5'8" and the tallest kid in the school.  I also stopped growing at age 12 before I hit puberty -odd that.  

 

Slowed growth can be a symptom of celiac disease but not all celiacs have it, just like not all celiacs get stomach aches, or arthritis, or anemia.  I was only anemic once in my life and that was due to another AI disease - the complete opposite of cyclinglady.  

 

I have three boys, two of whom have gluten sensitivity.  They tested negative but I made them gluten-free anyways, just to be safe.  Their symptoms improved even though according to the doctors, there was nothing wrong.  As you know, eating gluten-free is a hassle, but I want them safe rather than sick.  I didn't want to risk it.  Perhaps as adults they will challenge it, but I am in charge of their health now so they will have to skip the gold fish crackers.  

 

If you think it may be something else (thyroid?)  then keep looking into it, but you might want to try this "cure" in the mean time.  Best wishes in whatever you decide to do.

[Brit1612]

Thanks everyone....we are going to go ahead and go gluten free again.  But it is just so hard not knowing for sure.  Especially since there was no obvious change in him when we went gluten free the first time.  I just feel like we are going to want some kind of answer, or we will be doubting it forever.....

 

Looking back I should have asked her why she thought he was celiac (vs. being NCGS)??????  SInce we have not been able to prove anything clinically, would that mean he is likely just gluten intolerant, or still celiac?  Sorry for all the questions.  

 

Do NCGS people have a higher rate of low IGA, or does that only apply to celiacs?  I know the treatment is the same either way, but I can't help but feel like we should know which one it is......

 

One more question....she mentioned something about maybe his body is responding differently (less damage) because of his low IGA.  I understand (so does my GI) that the IGA was causing unreliable blood results, but I have always been under the impression it would not affect the biopsies in anyway.

 

Thanks again for the encouragement and help.  I am really curious to see if his ttg IgG will come back positive or negative this time, since it has been positive while gluten free and negative while eating gluten (so confusing!!!).

[nvsmom]

As far as I know, low IgA only applies to celiacs.  Some latent celiacs are called NCGS initially so I suppose it could sort of apply.

 

I never thought about low IgA and the biopsy... that makes some sense.  IgA is part of the immune system based in the mucosal linings, like mouths and our intestines, whereas IgG is a system wide part of our immune system - it isn't intestine specific. Hmmm.  I'm going to look into that a bit.

 

It's a shame celiac disease testing isn't more black and white.  Too many poeple go through an experience like your family.    Hopefully you'll get a clearer answer one day.

[frieze]

how long was he gluten free, when you tried it?  it does take time to improve.  the other obvious thought, was he really gluten free?  big learning curve.

[murphy203]

It's a shame celiac disease testing isn't more black and white.  Too many poeple go through an experience like your family.    Hopefully you'll get a clearer answer one day.

Yes, I completely agree!! And I suspect an immunologist might know more about an autoimmune disease like celiacs than a gastroenterologist.

[Brit1612]

Thanks everyone.....  I was thinking the same thing as far as trusting the immunologist, but I was curious why everyone seems to go to a GI, considering it is an autoimmune disease???  ( I guess the symptoms just lead them there....)

 

We did officially go back gluten free this weekend.  But I still feel like we need a diagnosis, or an answer.

 

As for frieze's question:  we were gluten free for over 5 months.  The only reason we stopped when we did is because he was still having stomach issues and I really wanted a second opinion before we got any further (our first GI at Texas Children's did not do a good job).  As soon as we went to the new GI she put us on a gluten challenge so we could repeat the biopsy and she went ahead and ordered more bloodwork (even though we were gluten free - just to get a baseline #), to our surprise the ttg igG was even higher. After nearly 3 months of a gluten challenge the bloodwork was repeated and the number was then <1!!!!  It is so confusing.  I agree that there is a big learning curve, the only thing that I worried about was if he was getting contaminated by our pots and pans.  I never used the toaster or anything obvious, but couldn't afford to buy all new kitchen stuff....

 

But if his number was higher from some contamination, it would not explain why it was completely negative while eating a lot of gluten a few months later?!  This time around I am going to buy some new kitchen stuff; I don't want any doubt in my mind that he is gluten free.

[Brit1612]

As far as I know, low IgA only applies to celiacs.  Some latent celiacs are called NCGS initially so I suppose it could sort of apply.

 

I never thought about low IgA and the biopsy... that makes some sense.  IgA is part of the immune system based in the mucosal linings, like mouths and our intestines, whereas IgG is a system wide part of our immune system - it isn't intestine specific. Hmmm.  I'm going to look into that a bit.

 

It's a shame celiac disease testing isn't more black and white.  Too many poeple go through an experience like your family.    Hopefully you'll get a clearer answer one day.

I agree, that in theory, what she said makes sense, but if that was true wouldn't it be a common issue or a well - known fact, considering how many celiacs do have low or absent IGA?  You're right it is a shame, especially with someone so little who can't even tell you if he is feeling better / worse etc.  Thanks again!