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

medic8r

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medic8r Newbie
medic8r
Posted

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
RiceGuy
Posted

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
ShayFL
Posted

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
Mother of Jibril
Posted
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
medic8r
Posted
  • Author

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
mushroom
Posted
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
Kit
Posted

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
Kit
Posted

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
sbj
Posted

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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    • SamAlvi
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      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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    • lizzie42
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      By lizzie42 · Posted

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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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