Need to hear experiences (pertaining to improvement) from people with children (~age 9) diagnosed with Celiac Disease

[dsfraley]

Good afternoon all,

My 9 y/o son was diagnosed with Celiac Disease about 1.5 months ago and has been gluten free a week longer than that. What triggered the doctor visits was sudden and extreme nausea -- without vomiting or diarrhea -- sore muscles and achiness all over his body (especially limbs), and general malaise. Every 2-3 days he would also get a very low-grade fever of ~100.0, though it would go away after a few hours. 

The pediatrician had no answers. The gastroenterologist expressed doubt because of the symptoms but diagnosed him with Celiac between antibody & DNA tests and following the endoscopy biopsy. 

Almost 2 months later, we are searching for answers because he isn't improving dramatically. So there seems to be some improvement to nausea in that he's not still continuously nauseous, and the achiness is reduced, but the general malaise (he describes it as "ickiness") remains there and the nausea is off and on. He was bedridden since the start of January of this year, and we are able to get him to do some light activities now, but the next day he is dead, and through some of these activities he is miserable. There are times though where we see him back to his normal self for an hour or two, which is great.

All of this said, we can't help but doubt the diagnosis is what is causing his state of health, though the spectrum of symptoms seems wide. But to put this in perspective: our own GI was extremely hesitant to write him a letter to excuse him from school because "kids go to school with Celiac Disease" and his symptoms shouldn't be so severe. He doesn't understand what's wrong with him and says we need to speak with the pediatrician, however we have spoken with two pediatricians and they have no ideas. We are lost as to what to do. 

I posted on here before and people suggested eliminating other triggers such as oats and dairy -- we have done both. He has not had oats now for about 1-1.5 months, and he has not had dairy for 1 month. Neither of these seems to have made a change. At the time we switched to dairy, we also reduced fodmap foods so he's not having anything not on the list (so no garlic/onion, on top of a variety of other foods). We are exceptionally cautious about contamination too. We are not eating out, we threw out all our kitchenware that wasn't stainless steel/glass and washable (and purchased new toasters/air fryers, etc.), and we do not bring any gluten-containing food in the house whatsoever. 

So what I'm getting at is: can anyone tell me that they've had similar experiences with their children? The doctors act like we are crazy to be concerned and think he should return to normal activities. However, anyone who knows him and actually sees him outside of a brief 5 min in a doctor's office realizes how badly he's suffering. We are trying to get him back, but it's a battle. He often does not sleep well at night, and days are miserable in most cases. Help!

[Aretaeus Cappadocia]

Sorry to hear what your family is going through. After 1.5 yr of gluten-free diet, my adult child has improvement but also still complains of some symptoms. It is hard to sort out.

I don't have any KO answers for you but a couple of suggestions:

- repeat the blood test. If IgA levels are still high, perhaps you haven't given it enough time, and/or his diet is not as gluten free as you thought. Even though it sounds like you are doing it the right way, maybe he has another source - friends, pet food, lotions, cheap chalk, play-doh..... Much more rare, he could be refractory to gluten free diet. If IgA levels are normal, then you have even more reason to look for another cause (keep in mind there probably is lag time between IgA levels and reduction of damage, however)

- (maybe) seek out a rheumatologist/immunologist. Celiac is an autoimmune disease. Assuming that the celiac disease diagnosis was correct, people with one autoimmune disease are more likely to have another autoimmune disease. Type I diabetes and hypothyroid are often mentioned

- document his condition for the next Dr visit. Take some short video clips showing his downtime. keep a diary of what he eats, does, feels to the extent you are able. Bring these to the Dr or send them in advance of a visit. 

Not sure any of these will help, but it's all I could think of. Best wishes.

PS Since you appear to be new to the diagnosis, you may not know this yet: have the rest of the family get the IgA test. Either you or your spouse (or both) almost certainly have the predisposition and any other children you have are at higher risk. I myself was diagnosed through a family screen after my adult child was diagnosed.

[knitty kitty]

Welcome to the forum, @dsfraley,

Has your son been checked for nutritional deficiencies?  Celiac Disease causes inflammation and malabsorption of nutrients.  It's part of proper follow up care to correct nutritional deficiencies.  Talk to your dietician and pediatrician about supplementing with essential vitamins and minerals while healing.  

The eight B vitamins are very important.  Our bodies can't store them for long, so we need to replenish them every day by eating nutrient dense foods.  Thiamine and the other B vitamins are needed to turn fats, protein, and carbohydrates into energy and for making life sustaining enzymes.

Nausea, muscle cramps and body aches, fatigue, malaise, changes in sleep patterns, and even body temperature regulation point to an insufficiency of the eight vitamins, especially Thiamine B1.  Metabolic demand for thiamine increases when we're sick and trying to recover. 

Higher than RDA levels are required to correct a thiamine deficiency.  Thiamine Hydrochloride (100 - 500 mg) is being given in the doctor's office while the doctor looks for health improvements.  Most people who are deficient have health improvements within two hours.  I had health improvements within half an hour.  Thiamine Hydrochloride is safe and nontoxic even in high doses.  Doctors don't get much education in nutrition, and don't recognize Thiamine deficiency outside of alcoholism because it presents differently, especially in children and non-alcoholics.  

Vitamin D is frequently low in the newly diagnosed, along with the other fat soluble vitamins A, E, and K.  Vitamin D helps regulate the immune system and can lower inflammation.  Vitamin A is needed to heal the intestines, and,  Benfotiamine, a form of Thiamine B1, has been shown to heal the intestines.  Minerals like Magnesium, along with Thiamine, will help relieve muscle cramps and aches.  

Additional autoimmune diseases like diabetes and thyroid problems show a connection to Thiamine insufficiency.  Correction of nutritional deficiencies is really important!!!

Rechecking tTg IgA levels should not be used to monitor ones diet for gluten contamination.  tTg IgA levels are correlated with intestinal damage, not gluten consumption.  

Refractory Celiac Disease is not to be considered until the patient has been on a strict elimination diet (like the Autoimmune Protocol Diet) for at least two years.  The AIP diet improved my health very quickly.  Dr. Sarah Ballantyne's book The Paleo Approach has been most helpful!

Do keep a food-mood-poo'd journal to take with you to the dietician.  It will be helpful to the dietician to spot nutritional inadequacies, and possibly food sensitivities.  Looks like you've done well to eliminate oats and dairy.  Some of us also find it helpful to go completely grain free during the first six months (see the AIP diet).  

I really can't emphasize the importance of supplementing with essential nutrients while in the early stages of healing.  Growth can be stunted, intelligence dimmed, if children don't get an abundance of vitamins and minerals. 

Do talk to your doctor and dietician about supplementing with a B Complex containing the active forms, Vitamin D, Vitamin C, and minerals like calcium, magnesium, iron, and zinc.

Best wishes!

[dsfraley]

Thanks for responses so far. So to clarify a few items addressed in your responses:

• Blood tests show everything is "normal" except for gliadin IgA, which is not the primary indicator. tTg levels have been normal. Normal blood tests include for deficiencies and we had a large panel done for exactly this. Celiac diagnosis based on gliadin antibodies, gene, and Marsh 3A duodenal biopsy. Doctors do not think supplements are the issue, but we have been giving him a gluten-free gummy they recommended. 
• Iron is normal, except ferritin is at 25ng/ml which appears to be as low as the "normal" value goes. In fact, looking at some scales this appears to be recognized as "low," but the blood testing group that ran this had "normal" as 25-500 and the doctor wasn't concerned about it. Still, while we're not giving iron supplements, we are trying to be extra careful of ensuring his diet gets iron.
• We have been extremely cautious about unexpected products containing gluten and discarded shampoos, toothpastes, etc. He's not playing with much at all since he's spent so much time on a couch/bed, so I don't think it's coming from any toys.
• We've considered the rheumatologist route -- maybe this is the way to go, and appreciate this recommendation. However, common indicators to these other disorders did not show a reason to think it's diabetes, hypothyroidism, etc., which is why we haven't gone to-date.
• We do have a food journal, and as far as we, the GI, and pediatrician see, there is no pattern thus far. I think it's difficult for the doctors to understand exactly what we are observing, though: he goes through short periods where he seems completely normal, and then an absolute *crash* and cannot function at all. Imagine being in the middle of playing catch with a ball in the house laughing, and mid throw or catch he yells "I can't; help!" (from nothing), falls on the ground, and lays there. And that misery continues for the rest of the day, if not through half of the next day (or even entire next day), primarily citing "ickiness," but also nausea as a secondary. He says it feels like he has the flu, but this is a 9 year old speaking. A video as evidence might help though... good idea.
• In other news: my wife tried to get herself and our daughter tested. Doctors declined because they don't have symptoms, I expect because insurance would not cover it (and for our daughter, they added they would not poke her without symptoms). In the case of our daughter, this is despite that the same pediatrician office(s) have our son's records. 

[knitty kitty]

Blood tests for vitamins are notoriously inaccurate.  Was thiamine specifically tested for?  An Erythrocyte Transketolace Activity Assay is more accurate than blood tests.

Thiamine Deficiency Testing: Understanding the Labs

https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/

 

High carbohydrate diets can cause low thiamine.

Thiamine Insufficiency Relative to Carbohydrate Consumption

https://hormonesmatter.com/thiamine-insufficiency-carbohydrate-consumption/

Edited March 23 by knitty kitty
Typo correction

[Aretaeus Cappadocia]

Just to clarify on the IgA tests: I was suggesting a follow up test to see if levels have dropped since going gluten free. It's a little early according to the typical schedule but you are dealing with an unusual situation. fwiw, when I went gluten-free, very careful, after 3 months my IgA levels went from 65 and 140 (14.9 was limit) to ~4.5 for both. The literature seems all over the place on how long it takes to get the antibody levels down but I don't think I am particularly unusual. I am luckier than many because I had the time, money, information, determination, and family cooperation to eliminate gluten from my diet.

Also, probably not an issue for you but I mentioned pets because I'm pretty sure the common cat and dog foods contain grains/gluten. Cats tend to be cleaner but dogs like to eat and slobber.

Don't give up on the iron issue. I'm just giving an anecdote but my child's diagnosis probably took a decade and by that time anemia was severe enough that it required a series of infusions to bring it back (on top of supplements) - and there was a significant improvement with normal iron again.

Really disappointing about the family testing. Kaiser was better to us and tested the whole family after 1 was dx'd. I won the lottery on that one even though I didn't think I had symptoms. Now that I am gluten-free I realize that I had symptoms that were outside the classic GI ones. My health IS better since going gluten-free. Maybe you would have more success with the GI doc rather than the pediatrician. 

If you haven't done this yet, try googling "is celiac the only cause of Marsh 3A?" I did it and there are results that could give you other ideas to pursue. I'm not qualified to handicap the probabilities.

Take a look at this thread and see if it rings a bell. There are a lot of differences but the similarities I saw were (1) questioning whether it was celiac and (2) switch flipping from fine to non-functional. For all I know this is a common thread but your second post reminded me of this other person. This person got some relief from steroid treatments, although it wasn't permanent.

 

[Aretaeus Cappadocia]

After posting my last response I saw your other thread for the first time and it made me think of something else.

Have you considered whole genome sequencing (WGS)? I believe the cost is down to around $500 and at least one vendor is offering a discount during "rare disease month".

It would be a long shot but WGS does sometimes uncover a diagnosis when other methods have failed.

I worked at two of the largest DNA sequencing companies before I retired and they have some amazing success stories. However, I have no way of knowing if your son would benefit.