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Need Help On Questions To Ask Gp

JessL30

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JessL30 Newbie
JessL30
Posted

New member here! This seems like such a great forum - I hope someone will be able to help me understand gluten sensitivity a bit better. I have been eating gluten-free for almost 6 months and seen a dramatic improvement in my health (I'm sure many of you understand that dramatic means going from not being able to eat without being sick for days to actually being able to function relatively normally).

To give some background:

I was sick for about 6 years -- constantly seeing doctors who said my digestive problems were related to IBS, stress, anemia, etc and the cycle continued. 9 months ago I was tested for celiac, but both the biospy and TTG blood test came back negative. I showed high levels of intraepithelial lymphocytes. My doctor didn't feel that there was concrete evidence I was celiac but when I asked if there were any other causes of high levels of intraepithelial lymphocytes, he said no. I went gluten-free regardless a few months later and like I said, feel pretty good.

I made another appointment with him and I'm struggling to figure out the kinds of questions I should be asking. I know how bad the consequences of ingesting gluten when you are celiac are but I want to know just how strict I should be. Do you think it's possible the blood tests and biopsy can be negative but yet I still have celiacs? It's a lifelong commitment and I want to be sure. Has anyone had multiple tests done or simply come to the conclusion themselves that 100% gluten-free is the way to go?

THANK YOU!

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Squidge Newbie
Squidge
Posted

My mom went to a conference on GI disorders. She then discussed Celiac's with the PhD nurse practitioner who specializes in this stuff, because I was getting the blood tests at the time. This nurse practitioner said that it's quite common for the blood test to come back negative and a person to still have Celiac's. A lot of the time the marker's just aren't high enough. I don't know about the biopsy though. However, the way I see it is if gluten-free makes you feel better, why stop. If you really want a diagnosis, go to your doctor and tell him that the diet made you feel better. There are also DNA tests tht they can do. They can't positively diagnose it as Celiac's but they can tell if you have the genetic markers.

Lisa Mentor
Lisa
Posted

Welcome!

After being sick for over six years and you have seen a dramatic improvement in your health, it should stand to reason, that a gluten free diet is what you body is trying to tell you.

Good health is always a commitment, whether diagnosed with Celiac or not. It IS evident that you either have a gluten intolerance or Celiac Disease.

If you feel better on this diet, stick with it.

JessL30 Newbie
JessL30
Posted
  • Author

Thank you both! I appreciate your help. I did make another appointment with my doctor so I hope to have all doubts ironed out then. Regardless, I am staying gluten-free!

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    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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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...
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      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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    • 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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