Non Celiac Gluten Sensitivity and Iron Deficiency Anemia Question

[MBM]

My 20 year old, who was having a lot of nausea and lower GI problems, recently got back his blood work and tested negative for Celiac Disease. However, his ferritin was 9 out of a range where 20 is the low.

 

In the past week since seeing his doctor, he's cut out gluten and symptoms have improved quite a bit, so it appears gluten is causing the problems.

 

His doctor wants to schedule an endoscopy and have him take Prilosec. My son is handling all communication with his doctor himself and does not know what questions to ask or how to clarify and also does not have the good sense to write down the med or procedure! So, I hear this from him, "I just spoke with the nurse and she said I need to take something and get something done." Ooookay. Luckily, he has an online portal with this info but before he contacts the doctor again, I thought I'd contact the hive to get some input.

 

My understanding for taking the Prilosec is that gluten may have damaged cells in the stomach that have something to do with acid. Anyone know? I'm trying to study up but thought someone here might have a quick clarification.

 

Is the endoscopy necessary quite yet if the symptoms are going away after a week? I would prefer to avoid gluten, increase iron-rich foods in his diet and wait two months or so to see if ferritin increases. I know the endoscopy could shed some light but it's so invasive.

 

I'm also thinking of getting all of us tested using the Cyrex Lab Array 3 which screens for antibodies to many of the proteome in wheat as opposed to just alpha gliadin. I wonder if I might have "silent" gluten sensitivity which, although it's not harming the GI, it could be affecting other parts of the body.

 

Then there's FODMAP intolerance which I have not read much about either.

 

Any info on any of the above is much appreciated. TIA.

[Jean in Newcastle]

If he goes through with the endoscopy, my understanding is that he needs to remain on gluten until the procedure is done. My Dd is having an endoscopy/biopsy for actual celiac disease tomorrow and she has to remain on gluten because otherwise they won't detect damage. I would ask about that anyway.

 

 

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[Crimson Wife]

My child with non-celiac gluten intolerance tested negative on both the basic celiac panel and the extended one. Ditto for wheat allergy (basic and extended). We did not bother with endoscopy because taking her off gluten solved the "failure to thrive" issue and having it would've meant putting gluten back in her diet.

 

There is a stool test that is supposed to be accurate even after the patient has gone on a GF diet. Haven't ever bothered with it due to the cost. But I would definitely have that run before subjecting my child to an invasive procedure like endoscopy.

[Crimson Wife]

Oh, and the FODMAPs don't bother my DD aside from gluten-containing foods. Beans, cauliflower, celery, garlic, onions, etc. don't seem to affect her at all.

[MBM]

Yes, we want to avoid the endoscopy if at all possible.

 

Thanks for linking that test. I'm going to look into it.

 

Interestingly, I wonder if DS2 had a growth problem due to gluten that wasn't detected. His older brother is 6'3" and ds2 is 5'6.5". When he was three, he saw a gastro specialist at UChicago who noted he hadn't grown much in over a year. The pediatrician just pooh-poohed it. DS2 also has other quirks that make me wonder. One is a tic where he snaps his elbow up. He has trouble controlling that.

Edited August 15, 2017 by MBM

[MBM]

If he goes through with the endoscopy, my understanding is that he needs to remain on gluten until the procedure is done. My Dd is having an endoscopy/biopsy for actual celiac disease tomorrow and she has to remain on gluten because otherwise they won't detect damage. I would ask about that anyway.

Thanks, Jean. I hope all goes well for your daughter tomorrow.

[City Mouse]

This sounds like my DS14. Food that contain gluten (and lactose) cause stomach issues including vomiting. His test for Celiac came back negative, but the dr did say that the test is around 80% accurate, so he could be in the 20%. Last spring his ferritin was 14 and his sleep dr wants the ferritin to be closer to 50. It was up to 23 last month and we will check again in Sept.

 

We are not going for any other testing right now other than general allergy testing in a couple of months.

[gingersmom]

My daughter tested negative for celiac. Gastroenterologist told her to go gluten free first and then dairy free if her symptoms did not improve.

 

She has not had one headache since going gluten free. Her stomach issues are completely gone. It's amazing!!

 

I wish we had done this when she was much younger. I used to carry bottle of aspirin around in my purse for her.

[wapiti]

We avoided the scope - so far.  My kiddo was having nausea and general GI issues increasingly over years.  She does not have the genetic haplotype for celiac, which put the odds for that very low.  GI doc put her on a trial of Reglan.  It helped, so she is on it for a while as long as she keeps it to once or twice per day (apparently there is a risk of bad side effects with taking it more often for a long period of time).  Based on the Reglan helping, the GI doc diagnosed gastroparesis, said it's very common, and added something about post-viral neuroinflammation as a likely cause.  Kiddo also feels much better GFDF (especially DF) though occasionally there will be meals causing nausea where we don't know why.  Anyway, since she seems to do ok as long as she is careful about GFDF and takes the Reglan with dinner and often lunch, we skipped the scope.

 

Someone (not the doc) also mentioned FODMAP to me as a possible option.  (Weird how common this situation is.)

[MBM]

Thanks for all the input. It's given me some much-needed information and ideas to pursue.

 

We've decided to see a gastro. Someone not recommended by my son's internist but the gastro is very good and also closer to us. We're not going to schedule the endoscopy at this point because all of ds's symptoms have gone away within the past 10 days that he has gone gluten free. The current doctor wants the endoscopy to see if ds had an ulcer and also to check if he might be one of the oddballs who has Celiac Disease despite testing negative for it. At this point I want another doctor's opinion regardless. What I'm going to ask about is Cyrex Lab's Array 3 and also the stool test Crimson Wife linked (thanks!). I really dislike the idea of having an endoscopy done at this point. DS is also going to remain gluten free.

 

What I want to ask the gastro about is the iron deficiency anemia (IDA). Specifically, I want to find out if he would recommend an IV of iron sucrose and possibly erythropoietin. I'm not so sure ds will be able to absorb much extra iron orally at this point and if oral iron might cause more problems. Ds has begun to eat more foods that are high in iron and is taking vitamin c with plant sources high in iron. So far, so good as far as tolerating them but I just don't know if it is the best way to go about helping the IDA.

 

Thanks again for all the advice. 

 

 

[muttmomma]

My teenage son also had very low ferritin. But did show high numbers with the celiac panel.

His numbers rose quickly with Oak iron and vitamin c.

 

The is a really good info graphic video or thete that shows how the non celiac gluten intolerance is just a stepping stone to celiac. Maybe Google the "gluten free warrior"

[MBM]

My teenage son also had very low ferritin. But did show high numbers with the celiac panel.

His numbers rose quickly with Oak iron and vitamin c.

 

The is a really good info graphic video or thete that shows how the non celiac gluten intolerance is just a stepping stone to celiac. Maybe Google the "gluten free warrior"

I'll be looking into the Oak Iron (White Oak Bark?) and Vitamin C as well as the video. Thank you for mentioning them.

Edited August 17, 2017 by MBM