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Hells Bells

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Hells Bells Apprentice

I wonder if anyone has any idea whats going on, I have been getting pasty looking, fatigued and recently when I stand up quickly I get dizzy. I am cold all the time but fatigue is my biggest thing. I am gluten free apart from the odd accident. I thought cold was due to thyroid, but now not sure. My blood pressure seems lower than it usualy is 105/70 usualy I'm at about 130/75, I got so dizzy I thought I was going to faint.

So can anyone help this 42 paranoid celiac, convinced I must have cancer or leukaemia or something, thats why I don't want to go to my doc, they always say its all in my mind anyway.

Oh also having real trouble sleeping.

Thank you everyone


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jerseyangel Proficient

Have you been tested for anemia? I had all of your symptoms--and found out that my hemiglobin was at 8. Just 3 months before, it had been at 11.5.

I had all of the symptoms you describe.

flowergirl Rookie

Yes, I agree. Get your iron levels checked. It also sounds like your metabolism is too slow. I have the same problems you describe. Try taking extra virgin, cold pressed coconut oil and flaxseed oil regularly. I was surprized how the metabolism picks up and the cold feeling fades away. Try it, you'll be surprized.

missyf Newbie

I agree. I would have your Iron checked. I have been struggling with Anemia for about 8 years. I have had 4 children, all c-sections, and my level was 6 before my last one in 2005. I was put on Iron Pills, which irritate my stomach. I try to eat lots of greens and red meats when I feel tired or dizzy. It seems to help short term. I believe it is still best to know and check iron level. Good luck

I do, still, feel cold, dizzy, and tired frequently. I am not convinced that it is the Iron Deficiency. Mine is around 10.5 normally now. I think it has to be something else. I have had several expensive tests, exams, x-rays, MRI, c-scan of everything from my head to my bowels. Nothing has turned up, aside from the anemia, celiac, and IBS. If anyone has an idea, please let me know. Thanks

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    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
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