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Could I Have Celiac

mcs12

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mcs12 Rookie
mcs12
Posted

Hi everyone!!

I have been lurking here for the past week trying to figure if I could possibly have celiac. These boards are wonderful!! My brother has known he has had a wheat allergy ever since he was child...they did not test for celiac back then. Because he is gluten free now, he hasn't been tested for celiac(even though he probably does have it). But, since learning that celiac is a genetic disease, my family has decided to get tested. I have symptoms such as bloating, constipation, fatigue, and just the overall feeling of not being quite right. I had blood drawn a week ago, but haven't heard back on the results yet. My doctor had to look up in a book what tests needed to be done, so I am already a bit skeptical if the tests come back negative if they are even correct. I have been contemplating going gluten free regardless of the results. Does anyone know how long it usually takes to get the blood tests back, and should I trust them? Thank you all in advance for your help. I am just at a loss. I feel terribly all the time, and if it isnt celiac how will I ever feel better?

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Guest nini
Guest nini
Posted

the tests can help screen for celiac, but they can never definitively rule it out. Positive dietary response is the most valid diagnostic test. So yes, regardless of your test results, try the diet and see if your symptoms improve. It takes an average of 6 months to 2 years for complete healing, so make sure you give it a good 6 months before you decide if it's helping or not.

Nancym Enthusiast
Nancym
Posted

The blood tests usually only show positive if you've got severe intestinal damage from gluten sensitivity. If you want to figure out whether gluten causes you problems and nip it in the bud before your intestines are a managled wreck, then you can either try a gluten free diet for a few weeks or you can get tested by Enterolab. Or you can do both, that's what I did. I went gluten free then several months later I got tested by Enterolab. I knew within a few days of going gluten free I'd found at least one of my issues. Their test is sensitive enough it can detect antibodies even months after going gluten free.

Nancym Enthusiast
Nancym
Posted

Oops! Posted to the wrong thread!

mouse Enthusiast
mouse
Posted

You can have a false negative on the blood tests, but you can never have a false positive. If you get a negative, you can always go gluten free to see if you improve. Some notice improvement in days and for some it takes longer. That does not mean that you heal as fast as you notice improvement. It takes time for the small intestine to heal - after all it took time to make us so sick. Welcome to the forum and am glad to know that we have already helped you in some way.

mcs12 Rookie
mcs12
Posted
  • Author

Thank you so much for your replies! I am going to cut out gluten starting today and see where that gets me. I am determined to stick to this in hopes of feeling better. It would make sense that celiac(or at least gluten sensitivity) is what it is considering my family history with stomach issues. My brother with the wheat allergy(maybe even celiac), my grandfather died of colan cancer, my uncle is bipolar and most likely has at least a wheat allergy but is far too stubborn and sick to really care. He and my grandmother both had major emergency stomach surgery(the name of the procedure escapes me right now). I plan on avoiding these major health concerns, and I think I have found the major culprit. Ah yes, and that side of my family is Italian, and I read somewhere that Irish and Italian heritage are most common with celiac. So, I am not waiting to hear about the blood test, I am starting today. If it does come back negative I will get the gluten sensitivity test by Entorlab done. Until then, I will trust my instincts. Thanks for all your kind words.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      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! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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