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How Much Of This Is Celiac, Or Could There Be Other Issues?


medic8r

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medic8r Newbie

My son was diagnosed with celiac by a ped GI in July of this year after a upper scope showed inflamation from the esophagus all the way to the duodenum and genetic blood test that the ped GI said was positive. He NEVER feels good. I was wondering, what are the most common symptoms each of you see in your child with celiac? I am wondering if we should be looking for another diagnosis........

constant headaches

constant general malaise /just not feeling good/always feeling bad

spells of palor/tiredness/weakness

stomach aches.....but here's the kicker-hardly ever diarhhea and only very seldom vomitting that is associated with Celiac

a month or two of neuropathy of his legs ("mom i feel like electric bolts are shooting in my legs)

everything hurts....legs, arms, stomach, head

requires long hours of sleep at night

had uncontrollable bowel movements, not loose

itchy skin but not blistery or rashy

can only eat smalls amounts, literally a few bites and hes full

yellow teeth, i read somewhere that was a sign of celiac

and again, did i say that he ALWAYS feels bad

thanks for yalls input!


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RiceGuy Collaborator

How old is your son?

Is there still gluten in your house? If so, he may be getting cross contamination.

The other thing which I know can cause many of the symptoms you describe, is candida. This often goes hand-in-hand with Celiac, so it wouldn't surprise be one bit.

ShayFL Enthusiast

If you are CERTAIN he is 100% gluten-free and no cross contamination at home/eating out/school/etc. Then you might consider eliminating DAIRY too. It may not be permanent. The tips of the villi digest milk and those were damaged based on what you have told us. Many Celiacs have to eliminate dairy at least for 3 or 4 months to allow their body to heal. Once he is all better, you can reintroduce dairy and see what happens (not gluten as that is permanent with Celiac).

Mother of Jibril Enthusiast
Is there still gluten in your house? If so, he may be getting cross contamination.

The other thing which I know can cause many of the symptoms you describe, is candida. This often goes hand-in-hand with Celiac, so it wouldn't surprise be one bit.

These are both good suggestions.

Also, he might be reacting to additional food(s): dairy, soy, corn, eggs, nuts, etc... Is there anything he really eats a lot of or seems to crave?

medic8r Newbie

UH... corn is out? i noticed everyone mentioning corn. i thought corn was ok. corn on the cob, in the can for vegetables, corn starch? what is the reason for no corn?

he has not been able to go completely gluten free. he fights me so bad and his father does not support the whole idea of him having celiac in the first place and refuses to be supportive, and its really hard.

but mainly i was wondering do these complaints of his sound like celiac or like a maybe he also has something else going on? the first thing drs and everyone says it "celiac.....oh the diarhhea and vomitting". but my son rarely has diarhhea, and i can count on my hands and maybe one foot the amount of times he has vomitted without having a stomach virus.

someone asked his age, he is 10 and a half and weighs 63 pounds.

mushroom Proficient
UH... corn is out? i noticed everyone mentioning corn. i thought corn was ok. corn on the cob, in the can for vegetables, corn starch? what is the reason for no corn?

he has not been able to go completely gluten free. he fights me so bad and his father does not support the whole idea of him having celiac in the first place and refuses to be supportive, and its really hard.

but mainly i was wondering do these complaints of his sound like celiac or like a maybe he also has something else going on? the first thing drs and everyone says it "celiac.....oh the diarhhea and vomitting". but my son rarely has diarhhea, and i can count on my hands and maybe one foot the amount of times he has vomitted without having a stomach virus.

someone asked his age, he is 10 and a half and weighs 63 pounds.

Symptoms are very individual to each person; we each react in our own way. I had diarrhea, others have constipation; some vomit, some don't; some have no GI symptoms at all. Some lose lots of weight, others gain. Some have migraines and neuropathy, others don't. It is very hard to say that one specific set of symptoms is or is not celiac. I think it is wonderful that you have a doctor willing to make the diagnosis; so many of us had to diagnose ourselves much later in life.

As for other food intolerances, I had sworn off corn and lactose long before I realized that gluten was the main problem. After giving up gluten I also had to give up soy and nightshades.

Cerainly to me all the symptoms you describe are indicative, and if he is not completely gluten free then he will continue to have problems. It doesn't take more than an itsy bit to trigger reactions, and unfortunately once you start eliminating gluten the reaction can even become worse. It is so important to avoid gluten totally, not just go "gluten light."

I am sorry he is continuing to have problems, but you must make him gluten free to get a positive response.

Kit Newbie

I am so sorry for all the pain and discomfort your child is experiencing. It has to be the worst feeling in the world to be helpless against your son's illness, especially if the source isn't identified.

Yes, all these problems can be caused by celiac disease. I would, however, get a full thyroid panel done on him. thyroid disease and celiac disease go hand in hand. Make sure to ask for the following tests, and get copies of the test results to verify yourself. These are VERY often misinterpreted by docs. Get a TSH, a free T4 and free T3 (NOT total t3 and t4!!!), If these look hinky (you want free T3 to be at the TOP of the normal range), you'll want antibody tests (TSI and anti-TPO).

I'd google celiac/thyroid and see if anything you find makes sense to you and your doc.

Good luck! Let us know how he is doing.

Kit in St. Louis

My son was diagnosed with celiac by a ped GI in July of this year after a upper scope showed inflamation from the esophagus all the way to the duodenum and genetic blood test that the ped GI said was positive. He NEVER feels good. I was wondering, what are the most common symptoms each of you see in your child with celiac? I am wondering if we should be looking for another diagnosis........

constant headaches

constant general malaise /just not feeling good/always feeling bad

spells of palor/tiredness/weakness

stomach aches.....but here's the kicker-hardly ever diarhhea and only very seldom vomitting that is associated with Celiac

a month or two of neuropathy of his legs ("mom i feel like electric bolts are shooting in my legs)

everything hurts....legs, arms, stomach, head

requires long hours of sleep at night

had uncontrollable bowel movements, not loose

itchy skin but not blistery or rashy

can only eat smalls amounts, literally a few bites and hes full

yellow teeth, i read somewhere that was a sign of celiac

and again, did i say that he ALWAYS feels bad

thanks for yalls input!


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Kit Newbie

corn is gluten-free, but it one of those things we may have become allergic to because of our impaired digestion.

Kit in St. Louis

UH... corn is out? i noticed everyone mentioning corn. i thought corn was ok. corn on the cob, in the can for vegetables, corn starch? what is the reason for no corn?

he has not been able to go completely gluten free. he fights me so bad and his father does not support the whole idea of him having celiac in the first place and refuses to be supportive, and its really hard.

but mainly i was wondering do these complaints of his sound like celiac or like a maybe he also has something else going on? the first thing drs and everyone says it "celiac.....oh the diarhhea and vomitting". but my son rarely has diarhhea, and i can count on my hands and maybe one foot the amount of times he has vomitted without having a stomach virus.

someone asked his age, he is 10 and a half and weighs 63 pounds.

sbj Rookie

There are indeed some other conditions that could be causing some of these symptoms. (OTOH, many feel that celiac disease can cause all of this and more.) You might want to inquire/read about allergic reactions, migraines, anemia, depression, kidney disorders, lack of exercise, or stress reaction.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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