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Tests For Celiac

jenny2

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jenny2 Rookie
jenny2
Posted

hello. i am having alot of problems with weight loss, diarrhea, and the list goes on and on. my doc gave me the celiac genetic test ( unsure of name) and it came back positive. he has since ordered a colonscopy which was normal and a small bowell follow up for next week. will the small bowell follow up show the damage in the small intestine? in 2004 i had a postive endoscopy with flat villi of the small intestine but all blood work was negative and they told me that i didnt have celiac because of the blood. now i am having problems again and just want to find out if i have celiac disease once and for all. thanks for the help..

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ravenwoodglass Mentor
ravenwoodglass
Posted

If you had flattened villi chances are really high you have celiac and your blood tests were a false negative. Have they run the blood tests again? You could be positive by now if you continued to eat gluten. What you need is another endo to see if your villi are still flattened as the other tests wouldn't show the damage.

After all your celiac related testing is done it would be a very good idea to get started on the diet strictly.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

My blood work came back negatice for Celiac, but the endoscope showed flattened villi. The GI specialist said it was Celiac Sprue.

There's about 30% of us that have normal blood work but have Celiac disease. I'm surprised you didn't get a DX in 2004 with your first endoscope! :o

I really wish Dr.s would learn more about the disease so they can DX sooner, saving people from additional damage to their bodies.

Good luck to you!

jenny2 Rookie
jenny2
Posted
  • Author

my doctor wants to run a small bowell follow thru. how do i get him to run a endoscopy? should i call them and ask them why they are not running a endo on me? I will not see the doctor again for awhile, he is going to wait till the results from the biopsy of the colonscopy and the small bowell come in.

ravenwoodglass Mentor
ravenwoodglass
Posted

my doctor wants to run a small bowell follow thru. how do i get him to run a endoscopy? should i call them and ask them why they are not running a endo on me? I will not see the doctor again for awhile, he is going to wait till the results from the biopsy of the colonscopy and the small bowell come in.

Whether you choose to do more testing or not is entirely up to you and with your past positive endo and recovery on the diet some doctors would give you the 'official' diagnosis if you need one any reason. If you do need to have more testing you might request that they run a full celiac panel on you first thing. Just because you were negative before doesn't mean you are now and make sure they test your total IGA and that they do the newest test the DGP in addition to the others. Then you could wait on those results before you do more testing. If it is positive then your doctor will likely agree to redo an endo and I would tell them I wanted that done first or just skip it and get on the diet. You also have the option of getting the full records from the last endo with the flattened villi and get a second opinion. You may find the second opinion guy considers you diagnosed.

No matter what happens with the doctors when all your celiac related testing is done do give the diet a good strict try.

jenny2 Rookie
jenny2
Posted
  • Author

i am going to get my medical records from 2004 today when the doc that did the endoscope told me that i had flat villi and looked like celiac disease. i am going to send them to my new gastro with the hope that he will do another endoscope on me. i understand why he did the colonscopy and has ordered a small bowell follow thru but at the same time i would like to have the endoscope done again because from what i am reading they say that is the gold standard of diagnosis? i need to get this straighten out once and for all, i know that there is something wrong with me because of the extreme weight loss of 25 pounds in 1 and half months. in 2004 when they found celiac with the endoscope i had lost 30 pounds in 2 months.

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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
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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? 
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    • lizzie42
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      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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