9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

[dsfraley]

Hello all,

I am writing here in hopes of hearing from the community as to whether the issues my son is facing are relatively common for individuals suffering from Celiac Disease. He is 9 years old, has the HLA2 gene, tested high for the gliadin IgG antibody (not the primary one, but still on Celiac panel), and biopsy of the duodenum came back as Marsh 3A classification. He has been dealing with severe nausea (no diarrhea/vomiting), muscle achiness, and flu-like malaise for over 2 months (and he has not been to school during this time -- he has been truly bed or couch-ridden, and to the extent that he can watch a show but does not want to read an easy book or play video games... which he loves). He had a very low-grade rolling fever of about 100.0 that the doctors wrote off because it was very low, occasional, and would only last a couple of hours at a time. Before the onset of this, he struggled with severe weekly migraines that sometimes led to vomiting, or at least not functioning until after sleeping it off (which we thought was associated with too much screen time in school). In any case, given those lab results above, he was diagnosed with Celiac Disease a few weeks back.

He has been on a gluten free diet for 3 weeks now. When I say a gluten-free diet, I mean: we have sterilized the house as much as possible (e.g., throwing away everything from the kitchen and replacing unless it was stainless steel, and washing that thoroughly, eliminated all gluten-containing foods from the house except for a few pre-packaged snacks for our other child that she can eat outside of the house such as at school, etc.), we have only given him foods that are certified gluten free unless it was something like meat (not seasoned), have not given him oats (even gluten free marked ones) to be safe, we have purchased new products such as shampoo and toothpaste, etc. He does not have any food not prepared in our house. In other words, if there is cross-contamination, it must be at exceptionally low levels.

Despite this, he: continues to have off and on bloating and nausea, continues to have flu-like malaise (though he hasn't had the occasional low-grade fevers for the last 2 weeks, struggles greatly to get to sleep and sometimes wakes up miserable in the middle of the night, cries frequently and constantly expresses how much he doesn't feel good, most often now describes a general feeling of "ickiness" that we cannot pinpoint. The gastro has nothing more to say other than stick with it; the pediatrician says we should try a rheumotologist (if we want) or a psychologist. The former seems unnecessary, and the latter suggests to me a complete lack of understanding of just how miserable he is (and I am highly disappointed by the suggestion and now frustrated with the pediatrician).

And so I am looking for support/thoughts: 

For those of you who have Celiac Disease, or know those affected by it, does this sound accurate? Is there hope? Or do you think we are on track of needing to get more opinions?

Thank you.

 

[knitty kitty]

Welcome to the forum, @dsfraley,

I recognize those symptoms as being related to Thiamine B1 deficiency, Gastrointestinal Beriberi.  I've had Gastrointestinal Beriberi and my doctors sent me to a psychiatrist.  It's not in ones head. 

Thiamine deficiency covers all the symptoms you've mentioned.  With such a high Marsh score, correction of nutritional deficiencies is extremely important.  Thiamine deficiency is the first to manifest because thiamine stores run out quicker than other vitamins.  

Ask your doctor for an Erythrocyte Transketolace Activity Assay as soon as possible!  Gastrointestinal Beriberi is under recognized by doctors.  

Thiamine can be administered by doctors by IV.  Thiamine is safe and nontoxic even in high doses needed to correct thiamine deficiency and gastrointestinal Beriberi.  Because thiamine is safe, there is no harm in trying Thiamine if only to rule Thiamine deficiency out.  

Correction as soon as possible is important as symptoms can increase in severity and become life threatening.  

[trents]

Is your son still consuming dairy?

[dsfraley]

Thank you for these thoughts, Knitty.

Trents: Yes. I would say we are taking it relatively light on his belly because it's been upset, so no heavy/excessive dairy, but he has had some cheese here and there. Not high quantities, however, and tests were negative for lactose intolerance.

[knitty kitty]

Thought I'd leave you the references:

Hiding in Plain Sight: Modern Thiamine Deficiency

https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/

"The early symptoms of TD are non-specific and may be easily attributed to any number of disease processes. Unrelenting or uncharacteristic fatigue, changes in mood with a tendency towards hyper-irritability and mood lability are common [4]. A sense of mental fuzziness and subtle decrements in memory are often reported, along with loss of appetite, sleep disturbances and/or gastrointestinal (GI) discomfort and dysmotility. Food intolerances and vomiting may develop as the deficiency progresses. Experimental [5] and case literature [6] suggest GI discomfort and dysmotility may be more prevalent early indications of TD than currently appreciated. A form of GI beriberi has been identified but is under-recognized [7]."

and...

Thiamine, gastrointestinal beriberi and acetylcholine signaling

https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/

 

[trents]

Lactose intolerance is not necessarily to problem in the celiac community. Intolerance to the dairy protein casein can be the culprit as it is similar enough to gluten to cause cross reactivity in a fairly significant element of the celiac population. Oats and dairy are common cross reactors in the celiac community. Eggs, corn and soy are also common cross reactors but oats and dairy are the two big ones.

Edited February 24 by trents

[Wheatwacked]

I can drink grass fed milk but commercial milk gives me heartburn from the cassein.  Brine fermented pickles can help establish lactobacillus in his gut.  They provide lactase to break down the lactose.  Vinegar pickled pickles do not.  inegar generally suppresses Lactobacillus by creating an acidic environment  that is inhospitable to the beneficial bacteria.  Organic pasture fed yogurt is good.  Some no fat brands of yogurt use various gums to replace the fat and these can cause a Celiac discomfort.  

Vitamin D, Thiamine, Iodine, Choline are some of the vitamins that are deficient in the western diet. Because of malabsorption from the Marsh 3 damage Celiacs are more deficient. Try to choose vegetables low in omega 6.

Yes there is hope.  It does take some time to heal the damage 

My son was diagnosed when he was weaned as an infant.  He grew up to be a proffesional ocean lifeguard.

[trents]

@Wheatwacked, all milk, whether from grass fed cows or grain fed cows contains casein. It makes up about 80% of the total protein in cow's milk. Do you need to elaborate on this statement?

[dsfraley]

Thank you all.

Regarding dairy products: I think we are getting to the point that we are ready to try anything, but of course hesitant to cut this out entirely too as he's still a 9 year old and adjusting to a diet missing other foods he's used to. We have already kept him from milk (which he loves) to not overdo the dairy, but complete elimination will be tough.

I have heard that the milk/casein association has more to do with its effects on an already damaged gut, such that it is more of a problem when healing and not long term: is the idea/suggestion proposed here that casein is triggering the same immune reaction as gluten would (which is a different matter)?

 

[Wheatwacked]

Anyway, I have no problem with grass fed milk other than the price.  Maybe I should move to Ireland or New Zealand.  They're the only countries that don't feed grains to their cows to increase milkfat and milk volume.

A side note: I just came back trom the vascular surgeon about the scan of my carotid arteries done last week.  A year ago I had over 90% stenosis in the right artery and 80% in the left.  Tcar procedure done in the right with a stent.  The results today were right side downgraded to Moderate stenosis and the surgeon did not expect to see as much improvement on the left. (untouched). I must be doing something right.  Recheck in six months.

Quote

Grass-fed dairy is often preferred by sensitive individuals because it typically comes from breeds that produce A2 beta-casein, which is thought to be easier to digest and less likely to trigger the specific inflammatory pathways associated with standard commercial dairy.

 

Mucosal reactivity to cow's milk protein in coeliac disease

This paper proves that cassein is the protein in cow's milk is the trigger but the study did not differentiate as grass fed milk.  I haven't found any studies specific to grassmilk. The study does not differentiate alpha or beta cassein.  Google says: some clinicians speculate that grain-based proteins could potentially pass into the milk, though scientific studies typically find no detectable gluten or gliadin fragments in bovine milk regardless of the cow's diet.

So given alpha cassein as the trigger, grass fed A2 cassein; thought to be easier to digest and less likely to trigger the specific inflammatory pathways associated with standard commercial dairy; plus the omega 6:3 ratio of grain fed milk is 5.8:1 vs grass fed ratio of 1:1, grass fed milk is less inflammatory.

Quote

Compared with milk containing only A2 β-casein, the consumption of milk containing both β-casein types was associated with significantly greater PD3 symptoms; higher concentrations of inflammation-related biomarkers and β-casomorphin-7; longer gastrointestinal transit times and lower levels of short-chain fatty acids; and increased response time and error rate on the SCIT. Consumption of milk containing both β-casein types was associated with worsening of PD3 symptoms relative to baseline in lactose tolerant and lactose intolerant subjects. Consumption of milk containing only A2 β-casein did not aggravate PD3 symptoms relative to baseline (i.e., after washout of dairy products) in lactose tolerant and intolerant subjects.

However, based on the gastrointestinal effects of BCM-7 (and hence milk containing A1 β-casein), it is possible that intolerance to dairy products in some cases is related to the consumption of A1 β-casein 

Accordingly, the consumption of milk containing A2 β-casein at the exclusion of A1 β-casein may alleviate or prevent the gastrointestinal disturbances associated with BCM-7.    Effects of milk containing only A2 beta casein

 

[trents]

2 minutes ago, dsfraley said:

I have heard that the milk/casein association has more to do with its effects on an already damaged gut, such that it is more of a problem when healing and not long term: is the idea/suggestion proposed here that casein is triggering the same immune reaction as gluten would (which is a different matter)?

 

Yes, that is the suggestion.

[cristiana]

Just to say that I too was hesitant to come off dairy products completely @dsfraley.  Milk, yoghurt and soft cheeses definitely caused bloating.  This bloating gave me rib and pelvic pain, and I remember  the pain was so horrible at times it was almost a sick feeling., kind of like the sort of aches you get with flu.   Milk, yoghurt and soft cheeses also gave me diarrhea, but I noted I could still eat small amounts of hard cheese like cheddar without any issues.

Re: milk, my gastroenterologist told me at that time that I could just by lactofree products, and should be fine, but when my gut was still very damaged they went right through me regardless.

Thankfully I am able to tolerate milk very well again, although I have noted that too much of it can have a slightly laxative effect.

The other thing that made me feel off were heavy iron supplements, which contributed to bloating and diarrhea.  In the end a GP told me to take ferrous gluconate, which is a much gentler supplement, with water an hour before breakfast in the morning.  That was helpful.  If your son is supplementing  (which needs to be under medical supervision as too much iron can cause issues) Floravital fruit syrup is another alternative, but make sure you don't buy Floradix as it contains gluten.

Lastly, all oats, soya products and certain pulses also made my stomach sore.  Apart from the oats (which need to be certified 'pure' aka gluten free ones) I was able to eat these things again some months after adopting a gluten-free diet.

I would say keeping a food diary might be worth a try, noting any negative symptoms following eating.  Patterns start to emerge which might otherwise be difficult to identify.

Edited February 24 by cristiana

[knitty kitty]

3 hours ago, dsfraley said:

is the idea/suggestion proposed here that casein is triggering the same immune reaction as gluten would (which is a different matter)?

I found some articles that illustrate the immune reaction to casein and gluten.

Bovine milk caseins and transglutaminase-treated cereal prolamins are differentially recognized by IgA of celiac disease patients according to their age

https://pubmed.ncbi.nlm.nih.gov/19290628/

 

Gliadin and Casein Metabolism: Synthesis of Gliadomorphin and Casomorphin and Their Biological Consequences

https://www.researchgate.net/publication/397908713_Gliadin_and_Casein_Metabolism_Synthesis_of_Gliadomorphin_and_Casomorphin_and_Their_Biological_Consequences

 

Effects of milk containing only A2 beta casein versus milk containing both A1 and A2 beta casein proteins on gastrointestinal physiology, symptoms of discomfort, and cognitive behavior of people with self-reported intolerance to traditional cows’ milk

https://pmc.ncbi.nlm.nih.gov/articles/PMC4818854/#:~:text=Results,lactose tolerant and intolerant subjects.

 

Casomorphins and Gliadorphins Have Diverse Systemic Effects Spanning Gut, Brain and Internal Organs

https://pmc.ncbi.nlm.nih.gov/articles/PMC8345738/

 

Brain Opioid Activity and Oxidative Injury: Different Molecular Scenarios Connecting Celiac Disease and Autistic Spectrum Disorder

https://pmc.ncbi.nlm.nih.gov/articles/PMC7407635/

 

[YoshiLuckyJackpotWinner888]

On 2/23/2026 at 5:30 PM, dsfraley said:

Hello all,

I am writing here in hopes of hearing from the community as to whether the issues my son is facing are relatively common for individuals suffering from Celiac Disease. He is 9 years old, has the HLA2 gene, tested high for the gliadin IgG antibody (not the primary one, but still on Celiac panel), and biopsy of the duodenum came back as Marsh 3A classification. He has been dealing with severe nausea (no diarrhea/vomiting), muscle achiness, and flu-like malaise for over 2 months (and he has not been to school during this time -- he has been truly bed or couch-ridden, and to the extent that he can watch a show but does not want to read an easy book or play video games... which he loves). He had a very low-grade rolling fever of about 100.0 that the doctors wrote off because it was very low, occasional, and would only last a couple of hours at a time. Before the onset of this, he struggled with severe weekly migraines that sometimes led to vomiting, or at least not functioning until after sleeping it off (which we thought was associated with too much screen time in school). In any case, given those lab results above, he was diagnosed with Celiac Disease a few weeks back.

He has been on a gluten free diet for 3 weeks now. When I say a gluten-free diet, I mean: we have sterilized the house as much as possible (e.g., throwing away everything from the kitchen and replacing unless it was stainless steel, and washing that thoroughly, eliminated all gluten-containing foods from the house except for a few pre-packaged snacks for our other child that she can eat outside of the house such as at school, etc.), we have only given him foods that are certified gluten free unless it was something like meat (not seasoned), have not given him oats (even gluten free marked ones) to be safe, we have purchased new products such as shampoo and toothpaste, etc. He does not have any food not prepared in our house. In other words, if there is cross-contamination, it must be at exceptionally low levels.

Despite this, he: continues to have off and on bloating and nausea, continues to have flu-like malaise (though he hasn't had the occasional low-grade fevers for the last 2 weeks, struggles greatly to get to sleep and sometimes wakes up miserable in the middle of the night, cries frequently and constantly expresses how much he doesn't feel good, most often now describes a general feeling of "ickiness" that we cannot pinpoint. The gastro has nothing more to say other than stick with it; the pediatrician says we should try a rheumotologist (if we want) or a psychologist. The former seems unnecessary, and the latter suggests to me a complete lack of understanding of just how miserable he is (and I am highly disappointed by the suggestion and now frustrated with the pediatrician).

And so I am looking for support/thoughts: 

For those of you who have Celiac Disease, or know those affected by it, does this sound accurate? Is there hope? Or do you think we are on track of needing to get more opinions?

Thank you.

 

I was diagnosed celiac 5 years ago. I know for certain that casein, grains, beans, seeds, and some other famous lectin issue foods are problems for me. When I was newborn, I had a huge issue with intolerance to milk. Five years ago before my celiac diagnosis, I had Irish cheddar cheese sold by Kerrie and it felt like an explosion in my intestines. I’m not sure if the casein was worse or the naturally occurring cheese mold in aged cheddar did it. I am IgG sensitive to yeast. Casein, yeast, or mold in the cheese might have been part or equally bad.

[Scott Adams]

It sounds like you’ve put a lot of effort into tracking patterns, and that kind of awareness can be helpful. With celiac disease specifically, though, the only confirmed immune trigger is gluten. Reactions to dairy are common after diagnosis because intestinal damage can temporarily reduce lactase, leading to lactose intolerance — but that’s different from casein sensitivity. IgG food panels, including yeast, are generally considered markers of exposure rather than proof of clinical intolerance. Aged cheeses like Irish cheddar are typically gluten-free, though they do contain casein and natural cultures. If symptoms are strong and repeatable, it may be worth working with a gastroenterologist or allergist to sort out true allergies, intolerances, or other GI conditions rather than assuming multiple cross-reactive immune triggers.

[Russ H]

I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary.