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Latent Celiacs, What Advice Were You Given?

AGH2010

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AGH2010 Apprentice
AGH2010
Posted

Hi everyone!

Was hoping to learn from what others have been told. My daughter tested positive on the ttg and EMA tests but her biopsies came back completely. Her doctor said she got to go down way too the bottom of her small intestines and too over 8 biopsies so she's fairly confident she would have caught some damage if it existed.

I've got her on the gluten-free diet nonetheless to see if it helps with her chronic constipation - and also because she's clearly making antibodies to gluten so why feed it to her unnecessarily.

I've been doing my own research and have seen the studies out there on latent celiacs but was interested in hearing what other people's doctors have suggested for kids with positive blood tests but negative biopsies.

Thanks in advance!

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StephanieL Enthusiast
StephanieL
Posted

We were given the option to scope every year or go gluten-free and see if the ttg levels fell. We chose option #2 and have been gluten-free for 2 years now. After a few issues (thyroid stuff) DS finally is WNL for his bloodwork.

dcns65 Apprentice
dcns65
Posted

My 17 year old daughter had positive blood work, negative biopsy and decided to go gluten free. The doctors gave her the choice of being tested again in a year while eating gluten or go gluten free. For us it was the strong family history, thyroid issues already starting and knowing another girl who suffered for months before she was diagnosed. My daughter also did not want to risk getting sick as she headed off to college next year. Even after 6 months of being pretty much gluten free her numbers were still not in the normal range.

AGH2010 Apprentice
AGH2010
Posted
  • Author

So it sounds like it's typical for doctors to leave it up to us to decide whether or not to go gluten-free. I can't imagine the constant scoping and basically waiting for there to be damage.

Our doctor said that we don't need to worry about cross-contamination since she does not have celiac yet. Anyone hear that from their doctor as well? Obviously would make things much easier if that's true.

StephanieL Enthusiast
StephanieL
Posted

Our doctor said that we don't need to worry about cross-contamination since she does not have celiac yet. Anyone hear that from their doctor as well? Obviously would make things much easier if that's true.

Um...no, I don't think so. If she has elevated ttg's and + EMA, then those numbers won't fall to being within normal limits without being totally gluten free which does include cross contamination

T.H. Community Regular
T.H.
Posted

Our doctor said that we don't need to worry about cross-contamination since she does not have celiac yet. Anyone hear that from their doctor as well? Obviously would make things much easier if that's true.

Obviously, I'm not a doctor. However, IMO, there doesn't seem to be enough research into this disease, testing, and gluten thresholds to warrant that automatic recommendation. It may be true, but it seems possible that it isn't. You'll probably have to make up your mind on that based on your and your daughter's experiences.

My son tests negative on the blood test, so he doesn't even HAVE celiac disease, but after my brother, myself, and his sister both came back positive, we had him on the gluten-free diet, too. He had problems clear up that had been bothering him for years.

Because he lives in a gluten free household and we're buying food for Celiacs, we always had gluten-free food that avoided cross-contamination. On a couple recent trips though, my husband allowed him to have 'just' gluten free food without worrying about cross-contamination. That's how we found out that it makes him sick. It's done it every time since then, too.

According to your doctor's theory, he shouldn't have a problem with cc, because he doesn't have Celiac Disease. Someone forgot to give my son's body the memo. ;) We've had to make our own judgement about how much gluten our son can tolerate. We are still working on figuring out how much he needs to avoid, but cc is definitely an issue for him.

I don't know that we would have figured it out without having gone completely off gluten first, though.

lil'chefy Apprentice
lil'chefy
Posted

We were given the option to scope every year or go gluten-free and see if the ttg levels fell. We chose option #2 and have been gluten-free for 2 years now. After a few issues (thyroid stuff) DS finally is WNL for his bloodwork.

What is WNL? What thyroid stuff?

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StephanieL Enthusiast
StephanieL
Posted

What is WNL? What thyroid stuff?

WNL= within normal limits. Sorry, the medical professional escapes from me at times.

After 18 months of DS's ttg's remaining high and a few off TSH levels and the help of people here I demanded we see an endocrinologist. In March DS was put on synthroid. His ttg's at 24 months were finally normal. The thyroid issues (I believe) were causing his ttg's to remain elevated even though he was totally gluten-free and cross-contamination wasn't the issue.

Mom-of-Two Contributor
Mom-of-Two
Posted

Hi there! I appear to have a "latent" celiac kiddo as well- I had my kids tested back in April after learning I myself have celiac disease, in January. Just wanted to get a baseline on them, they didn't have abdominal symptoms. My 8 year old came back with a ttg of 78.20 so he sent her for a scope, which was totally normal, also 8 biopsy samples, very good GI dr at a children's hospital, I feel the endoscopy and biopsies were done excellently. However, since her villi were "beautiful" as the GI dr said to us, he was not willing to diagnose her as celiac. He also didn't run any other tests on her, only tTG and the total IGA number. He told us she is likely in the latent form of the disease and may never develop symptoms- to feed her normally and re-test every 6 months or come back if she gets symptoms!

Went for a second opinion at the Cleveland Clinic where I am seen myself, this pediatric GI dr specializes in childhood celiac- guess what, he told me the same thing!! He tested her for the EMA and Vitamin D, CBC, iron. She was vitamin D deficient, and POSITIVE on the EMA. At that point, I had my answer, not to mention the genetics since I have celiac myself- they DID try for gene testing for her, but insurance denied it twice. Not paying out of pocket when I am proof of the genetics! He also got the biopsy results to have his pathology take a look, just to be certain nothing was missed- everything was normal, he said if there were any abnormal number of cells or anything, that he could use that to diagnose, but, not even increased lymphocytes.

So, we have decided to be gluten free and raise her with celiac, which is my suggestion to you as well! Why hang around and wait for your child to get damage, we are lucky that our kids don't have damage YET! Damage means vitamin deficiencies, maybe trouble digesting lactose, and eventually symptoms of celiac disease. For kids, growth issues as well, I just can't take that chance for my daughter. I am sure you feel the same.

I do wish I would have gotten a biopsy confirmed diagnosis on her, but what can you do? I wanted to deny it, after two good doctors told me to NOT put her on a gluten free diet. But I will not wait around for my very HEALTHY kid to get sick! And, I will NOT keep re-scoping the kid to check for damage! Good grief!

Good luck to you, sounds like our kids are quite similar!

StephanieL Enthusiast
StephanieL
Posted

Just to add too, our Cleveland Clinic Dr. called Dr. Fassano at the Maryland Celiac clinic and he was the one who said to either biopsy every year till there was damage or to go gluten-free and see if the ttg's came down and if so, that was our answer (being Celiac).

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      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
      Son's legs shaking

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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      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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