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Don't Know If Have Celiac

Punky Brewster

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Punky Brewster Newbie
Punky Brewster
Posted

I have RLS. I have tried Mirapex And Requip. These drugs had terrible side effects from insomnia, nausea, vomiting and headaches. My neurologist now has me on klonopin 1 mg. 2 times daily at my request. Now I am sleeping and the RlS is subsiding.I recently saw my primary physician and requested iron levels be tested along with other tests that are done every 6 months. Dr. called me today with my results.Everything was in range except the iron that is stored in bone marrow was low. I believe she said level was 8.Any ideas?

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mushroom Proficient
mushroom
Posted

Hi, Punky. I am wondering if you have any other symptoms of celiac disease besides RLS and low iron. In case you are not familiar with all the symptoms here are a couple of sites to check them out (there are many more if you do a google):

For symptoms see: Open Original Shared Link

Open Original Shared Link

See if you can find yourself somewhere in here.

If I were you and could put forth a case for it, or even on a whim, I would ask my PCP to do the initial testing. Just ask her if she would run a celiac panel on you (make sure she includes total serum IgA and DGP). If these are negative then she probably won't' refer you to a GI unless you have a PPO plan where you can refer yourself. But the GI's tend to be rather imperious and know-it-all and it is hard to find one tht knows a lot about celiac (or knows as much as he thinks he knows :P ).

Anyway, read through the symptoms and see if any of it applies to you. Google for extra sites and read all you can about it so that you can arm yourself for a doctor's visit where you ask for the testing. It is sthe only way to know. If the testing comes back negative, then try going gluten free (you don't need a doctor's permission) and see if it helpsl :)

cassP Contributor
cassP
Posted

im assuming your stored iron in the bone marrow is FERRITIN... and if yes, 8 is WAY tOO LOW, and could most definitely be causing your RLS. now, why do u have the LOW FERRITIN?? could it be Celiac? do u have Hashimoto's Hypothyroid?? (both these diseases impair your digestive system's ability to absorb iron)... or do u have any kind of bleeding disorder?? Fibroids??

my bff's Ferritin was 6 or 7, she had really bad RLS, pica, hair loss, fatigue, etc... and she had enormous fibroids that had to be removed.

my ferritin was 11.. and i had fatique, hair loss, and could not tolerate my thyroid meds at all ( i have both Celiac & Hashimoto's).

you should aim to get your ferritin between 50-90.. and iron 70-80 ( i think)... dont supplement too fast like i did.. iron above range can be dangerous too.

& i agree w/Mushroom- i actually just asked my PCP to run a Celiac panel... she asked me why- and i told her about all my digestive crap. i was lucky she ran a complete panel, as i didnt test positive on ALL the antibodies..

good luck to u!

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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! 
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      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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