Help! Crazy Numbers On Blood Test Does Not Match Symptoms. Doctor In His Own Brain Fog

[Williamsmom]

My 13 yo son was tested 4 months ago.  The test came back with very high numbers for celiac:

Deamidated Gliadin IgA 105 & IgG 154; t-transglutaminase IgA >100 & IgG 8,  Endomysial Antibody IgA positive. 

Pediatrician was amazed at how high the numbers were and GI called them very impressive. They followed with endoscopy and biopsy that was positive for celiac .  We were completely unfamilar with Celiacs disease and the rest of the family tested negative including his twin brother and 2 other siblings.  

 

Strangely he has never had any GI symptoms.  He is quite small for his age, but so is his brother and father.  His symptoms were fatigue, back pain, sore throat and general malaise also affecting his ability to function well in school.  Doctors said all this was related to celiac.  I asked to test for vitamin deficiency and/or for referral to nutritionist and told it wasn't necessary.  Doctors referred us to a website and said go gluten free!  

 

Fast forward four months and his symptoms have only improved marginally, although he did gain about 7 lbs.  We are gluten-free and my son has been super vigilant- bless him.  He really wants to have the energy to go back to playing sports etc.   I've gotten calls from other moms, "Is it true that your son can't eat a burger if it just touched the bun?" 

 

Back to GI today who said he would do blood work to check, but that his symptoms do not appear to be related to Celiacs disease. I guess 4 months ago they were all so excited about the 'amazing' numbers they weren't listening to us.  Doctor says he has Celiac, but probably just asymptomatic. Doctor thinks we should see Rheumatologist and Endocrinologist.  

 

So now I am wondering what the....  

Could these test results have been a mistake?  But I thought endoscopy was definitive although I don't have the actual biopsy results in my hand (going to request a copy asap).

 

And I still have a sick 13 yo boy.  Does anyone know if fatigue, back pain, sore throat and inability to concentrate in school could be related to Celiac.

Should I go to Rheumatologist?  We live an hour from Columbia Univ Center for Celiac Disease.  Thinking of just taking him there for some definitive answers first before I get back on the doctor carousel.

 

I would appreciate any advice or feedback.

Thanks!!!

 

 

 

 

[CajunChic]

I don't believe the tests were a mistake. His symptoms are very much like celiac, some never experience GI problems. I'd have to say that fatigue is probably the most prevalent and severe (in my opinion) symptom to deal with. It may take months or years for his body to heal. Please stay diligent in keeping him gluten-free, he will heal! As a mother, I'd probably bring him to the celiac center, to have a comprehensive look at all of his ailments. However, I'm pretty confident he'll see improvements strictly gluten free. Good luck, prayers to y'all for recovery!

[GottaSki]

Welcome!

 

No, it would not be possible for 4 positive antibody tests along with an endoscopic biopsy to all be incorrect.  That your son has gained weight is confirmation of improvement on the gluten-free diet even if all his symptoms have not yet resolved.

 

I think what this GI is saying is these other unresolved symptoms are not related to celiac.  They can be, but they can also be related to other autoimmune disorders so it would be prudent to be seen by Rheumatology to rule out any other causes while hopefully continuing to improve gluten-free. 

 

With regard to running another celiac antibody panel -it is normal to run subsequent antibody tests at 3 or 6 months and then annually thereafter.  Of note...your son had very high DGPs and tTG-IgA so it can take time for these to come completely down...they should be much improved at 4 months, but may take longer to come all the way down. 

 

Hang in there Mom and family

 

Edited to add this link to a comprehensive list of symptoms associated with Celiac Disease:

 

Open Original Shared Link

[tshep]

 A lot of your described symptoms can definitely be linked with Celiac Disease, but if his fatigue, back pain, sore throat symptoms are not even improving at this point, there is probably something additional.  This may some random, but have you had him checked for mono? I got it from traveling a few years ago, with identical symptoms to what you are describing, the only difference being that I also had an immense head ache (to the point where I could not be out in daylight).  For me, it lasted almost a solid year (the fatigue and aches portion, not ALL the symptoms).  Just a thought.  I hope your son feels better soon, I can't imagine the stress you must be going through to feel so helpless to make your child feel 100%. Hang in there!

[Williamsmom]

Thanks for the replies and information. We did have him tested for mono 4 months ago and they are testing him again now. I'm going to make appt with rheumatogist and see what happens with his blood tests they are running.

[cyclinglady]

I didn't have an GI symptoms and only had anemia (low iron (ferrritin) levels) and thyroiditis.  I had back pain and recently found that I had a fracture.  Perhaps a bone density scan?  Children can develop osteoporosis with malabsorption issues (e.g. celiac disease).  

[frieze]

you really do need to get nutrient levels drawn......

[Williamsmom]

So I should get a bone scan and nutrient levels. Which nutrients?  GI is testing  for b12 deficiency and folate. ,  I'm giving him a multivitamin, but I don't know if that is enough.

 

Thanks

[frieze]

So I should get a bone scan and nutrient levels. Which nutrients?  GI is testing  for b12 deficiency and folate. ,  I'm giving him a multivitamin, but I don't know if that is enough.

 

Thanks

is the vitamin gluten free?

you need vitamin D, more of the Bs, and perhaps K

[Rucko]

I feel for your boy, it must be discouraging to continue feeling so poorly, but at least the healing process has begun.  I wonder if your doctor has checked his thyroid and also for thyroid antibodies? That might account somewhat for the fatigue.  

 

It sure wouldn't hurt to have him take a really good multivitamin for awhile and possibly some probiotics as well.  

 

And since he's 13, maybe you should encourage him to have a look at the Forum himself, if he hasn't already, as there are things he may find interesting under Sports and Fitness, or in the Teen & Young Adults category.  He could also have a look at some of the articles on fitness on the Robb Wolf website:  Open Original Shared Link  where there are a bunch of stories written by others who had similar health problems and were eventually able to improve their strength and condition.  We all need inspiration and as much hope as we can get.

[nvsmom]

It can take a long time for symptoms and illness to improve in celiacs. Children appear to heal a bit faster, but I know that I was still having symptoms at 6 months gluten-free, although most were reduced.  I still get back pain, fatigue and what feels like a sore throat but is actually sores on the top, and back of my mouth.

 

It could be related to other problems too. Like Rucko asked, was his thyroid function checked? It's pretty common for hypothyroidism and celiac disease to be linked.  To test his thyroid, request a TSH (should be near a 1, regardless of most reference range,s in most people), free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab.  The symptoms you listed fit with hypothyroidism too.

 

The nutrients that are most commonly affected my celiac disease are: B's (B12 most often), D, A, potassium, magnesium, calcium, iron, ferritin, folate, zinc and copper. Try to get them all tested. Doctors now a days seem to focus on D, B12, iron and folate and skip the rest which is a real shame as not everybody is affected in the same way. For example, I was low in A and zinc but exceeded normal in B12, and was fine in everything else.

 

Good luck. I hope he feels better soon!

[Lorisue5]

My 13 yo son was tested 4 months ago.  The test came back with very high numbers for celiac:

Deamidated Gliadin IgA 105 & IgG 154; t-transglutaminase IgA >100 & IgG 8,  Endomysial Antibody IgA positive. 

Pediatrician was amazed at how high the numbers were and GI called them very impressive. They followed with endoscopy and biopsy that was positive for celiac .  We were completely unfamilar with Celiacs disease and the rest of the family tested negative including his twin brother and 2 other siblings.  

 

Strangely he has never had any GI symptoms.  He is quite small for his age, but so is his brother and father.  His symptoms were fatigue, back pain, sore throat and general malaise also affecting his ability to function well in school.  Doctors said all this was related to celiac.  I asked to test for vitamin deficiency and/or for referral to nutritionist and told it wasn't necessary.  Doctors referred us to a website and said go gluten free!  

 

Fast forward four months and his symptoms have only improved marginally, although he did gain about 7 lbs.  We are gluten-free and my son has been super vigilant- bless him.  He really wants to have the energy to go back to playing sports etc.   I've gotten calls from other moms, "Is it true that your son can't eat a burger if it just touched the bun?" 

 

Back to GI today who said he would do blood work to check, but that his symptoms do not appear to be related to Celiacs disease. I guess 4 months ago they were all so excited about the 'amazing' numbers they weren't listening to us.  Doctor says he has Celiac, but probably just asymptomatic. Doctor thinks we should see Rheumatologist and Endocrinologist.  

 

So now I am wondering what the....  

Could these test results have been a mistake?  But I thought endoscopy was definitive although I don't have the actual biopsy results in my hand (going to request a copy asap).

 

And I still have a sick 13 yo boy.  Does anyone know if fatigue, back pain, sore throat and inability to concentrate in school could be related to Celiac.

Should I go to Rheumatologist?  We live an hour from Columbia Univ Center for Celiac Disease.  Thinking of just taking him there for some definitive answers first before I get back on the doctor carousel.

 

I would appreciate any advice or feedback.

Thanks!!!

I have a 17 year old daughter with fatigue and 2 stress fractures (different legs and different locations) in less than a year.  No GI symptoms.  Diagnosed 2 months ago and have been gluten-free since.  I noticed some improvement in her fatigue in week 3, could just see it in her face.  She noted a little improvement in week 4.  We are still working on it - she also has insomnia which could be due to celiac.  The back pain could be due to osteoporosis.  I'd get a DEXA scan to verify.  Very new to this, so not a lot to offer, but always helps to hear of others that could be similar.  Prayers for him and your family to see some improvements soon.

[worriedseattlemom]

I'm really new to this, too, with my 8-year-old daughter, but I just wanted to reach out. This is SO tough, seeing your child feel badly and not improving quickly. We're dealing with celiac and thyroiditis. Feel free to inbox me if you ever just want to kvetch. I know I'm feeling very overwhelmed. Hugs!