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Don't Know If Have Celiac


Punky Brewster

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Punky Brewster Newbie

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

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

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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    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
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      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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      Wow, that's alot of info, Thanks!!!! I had my intake with Nutrionist where we went over basics and then will have follow up where we will talk about all the questions I've come up with (including the fiber question and so many more). I'll talk to her about the info you provided as well.  Thanks again (newbie here 😀)
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    • knitty kitty
      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
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