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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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    • 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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      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!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
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