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Hillary

I Am Really Struggling

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I have not been officially diagnosed. My blood work was IgA Gliadin 26 <20 is negative and the rest of the bloodwork was negative. I had been off gluten for 5 days before that. I had decided not to have the biopsy and just try the diet. The first 2 days I lost a lot of water weight and the swelling in my tongue and neck went down considerably. I have been following the diet for 1 month and I actually feel worse. My muscles feel so weak and shin bones hurt. The knuckles on my hands are swollen and they hurt. I am having muscle twitches all over my body. I feel like my body is shaking inside. I can't stop crying. I wake up with bloating and I don't have much of an appetite. I feel like my skin is burning. Any opinions would be welcome. I have started taking iron and vitamin d, cal/mag. I also have to empty my bladder a lot, but that is nothing new.

Thanks

Hillary

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Hi Hillary,

I'm sorry you're feeling so awful! Have you had your nutrient levels checked? I felt really bad for a month after going gluten free. I had body aches, joint aches, swelling in my joints, the whole nine yards. Several people on here suggested having my nutrient levels tested and I haven't checked them yet, as I'm strapped a bit financially right now, but I did research Vitamin D deficiency. If you're deficient in Vit D (and a lot of people with gluten sensitivity are, well most people are in general) you can have muscle and joint aches pretty bad. A deficiency can also cause fatigue, muscle weakness and a whole handful of other symptoms. I bought some Vit D pills 2 weeks ago and have been taking them faithfully everyday. WOW, did I see a difference! Within a week I started feeling a bit better and now, 2 weeks later, I haven't had any aches for several days now. I'm getting more energy, too.

I would highly suggest getting your levels checked, and if that's not an option, start taking some Vitamin D everyday. I know the upper limit for Vit D is around 2000 mg/day, but they've shown that taking up to 10000 mg/day is not harmful. Right now I'm taking 2 Caltrate w/D, 1 Vit D pill (2000 mg) and a mulitvitamin. I'm getting roughly 5000 mg/day right now. Talk to your doctor about it! Please let us know how you're doing...hoping you feel better quickly!

Janie

p.s. Get your B12 levels checked too...it sounds like you may have a deficiency there, also

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Thank you Janie. I really needed to hear that. I can't sleep and my doc doesn't want to test for vit/min def. Is it possible this is osteomalacia? I can feel that the bones in my shins are very thin and tender to the touch. I have been taking 1400 mg of Vit. D for the past 3 days, but maybe I will up it. I was starting to think I had some other disease. I see an endo next week about my thyroid because I probably haven't been absorbing my thyroid meds so that is a double whammy.

Thank you for the support at close to midnight.

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Be careful on the vit. D. We get some of it from our food (fortified foods) and some from the sun, and then when you add supplements on top of that you CAN OVERDOSE. Oversosing on Vit. D. causes liver damage. I would not take mega doses of vit. D. without being directed by a doctor and having levels checked regularly.

Perhaps your endo will be willing to check nutrient levels for you. Why won't your doc do it? Your bloodwork, while maybe not 100% conclusive, does point to possible Celiac. Celiacs are notorious for having horrible nutrient levels. Is it possible for you to find a different doctor?

-Elizabeth

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We are not getting much sun here in Northern Ontario and I have to push myself to walk to the end of my street. My doc says he cannot diagnose celiac based on the bloodwork and says my calcium was fine a month ago. I am seeing my naturopath next week and if I have to pay for blood work then so be it. It is difficult to get another doc in our city, as there is already a shortage and noone will take on new patients.

Thanks for the reply.

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Hi Hillary,

I'm so sorry you feel so bad. Believe me, I understand completely. I was just going to ask if you had your thyroid levels checked & then I read some more & seen you already take a replacement. Yes, definitely get them checked soon! I've been gluten free for eleven weeks now & my thyroid levels were down when I first got diagnosed & now I'm hyperthyroid because my body is absorbing the the sythyriod better. Now having trouble relaxing & I'm still having trouble keeping my weight up. So, just watch if they want to raise your thyroid medicine you might not want to do that right away since your intestines might be healing & absorbing the medicines better as well as your vitamins. Two months ago I was below so my doctor raised the synthyroid to 137 & 1 pill extra on day seven & then I had to get it lowered last month & just this week I had to go down to 125. But I do have celiac disease & a lot of damage to my intestines too and everyone's different.

Just a thought. I really hope you feel better soon! :)

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Thank you. This forum has been a godsend and I have learned so much. I had RAI in 2002 and over the past year my tsh has been going up. It makes sense not to increase the dose because then you will go the other way. It is so tough to regulate thyroid meds when there is no underlying problem, never mind an absorption problem. Being hyper is not any better than hypo, but I swear sometimes you can swing back and forth.

Hillary

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In addition to Vitamin D and Zinc I take a B-Complex and they seem to help me a lot. I would be interested in getting more information about what type of Gluten elimination diet you are following. Could be some good stuff is missing from the diet.

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I have not been officially diagnosed. My blood work was IgA Gliadin 26 <20 is negative and the rest of the bloodwork was negative. I had been off gluten for 5 days before that. I had decided not to have the biopsy and just try the diet. The first 2 days I lost a lot of water weight and the swelling in my tongue and neck went down considerably. I have been following the diet for 1 month and I actually feel worse. My muscles feel so weak and shin bones hurt. The knuckles on my hands are swollen and they hurt. I am having muscle twitches all over my body. I feel like my body is shaking inside. I can't stop crying. I wake up with bloating and I don't have much of an appetite. I feel like my skin is burning. Any opinions would be welcome. I have started taking iron and vitamin d, cal/mag. I also have to empty my bladder a lot, but that is nothing new.

Thanks

Hillary

You poor thing! :( I can sympathize with how you feel. I had a lot of the same things happen to me the first couple months I was gluten free. I kind of likened it to the withdraw that drug addicts feel. I felt better the first few weeks and then all of the sudden I just felt awful for about a month or two. It was like my body was so used to fighting and having all the gluten and now it didn't have any and it was rebelling! My muscles just ached, I had cramps in my feet and calves several times a day (the really bad ones where you can feel the knot!). I had headaches, shakes, and I was amazingly emotional. The smallest thing would make me cry. I think now, looking back, this was my body's way of getting out every last little bit of gluten. I also realized that on the gluten free diet, I have to eat MORE than I was eating before because I don't have all the fillers. I eat 6 small meals a day now instead of 3 bigger meals a day. I found that helped regulate my body better and it really got rid of the shakes!

The feelings passed in a couple months and now I feel AWESOME! Just give it time -- there is light at the end of the tunnel! Also, you may want to just let your doctor know what's going on, because you could have some kind of infection or some other autoimmune issues or other food allergies going on.

Good luck and I hope you feel better soon!!

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The knuckles on my hands are swollen and they hurt.

Hello Hillary-

I see that others have responded to many of your points, but I wanted to suggest if you haven't seen rhuematology &/or had your SED level or CRP (C-Reactive Protein) level checked that perhaps you should. I know that many of my symptoms were very much like RA or Lupus, but these tests always came back indicating no inflamation.

When I read your post about your knuckles I remembered that an excellent Rhuematologist I had seen during diagnosing my mysterious condition had made a big point out of checking the joints in my fingers for swelling.

While I hope you improve by living gluten-free, I do encourage you to keep after your doctors to find the correct solution. Whether or not you are Celiac you may have another condition.

Feel Better Soon!

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Thank you. I have had the SED and RA and Lupus test and everything is normal. I have had an MRI of brain and spine and all normal. Not even an elevated white blood cell count. Six months ago I had numbness, musclle weakness, vertigo, hair falling out, white tongue with sores, sore eyes, headache, night shin pain. A month ago I started with D and cramps. Since going gluten free the swelling in my fingers and abdomen has gone down as well as my tongue and neck. My skin and hair felt immediatly softer and the D. and brain fog stopped. Through all of this I didn't have fatigue until last week. I started an iron supplement and that has improved. I only started Vit. D 4 days ago and it was only 1000 mg. I have upped it to 3000.

Yes I really have to make myself eat. I am doing small meals and trying not to do a lot of processed stuff.

Thank you for all of your support. I mostly had neuro symptoms and I guess they will take a while to go away, not to mention to get my thyroid working optimally again.

Hearing your stories really helps. It is like a battle going on inside your body. I thought going through hyperthyroidism was tough, but I think this is worse.

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I have not been officially diagnosed. My blood work was IgA Gliadin 26 <20 is negative and the rest of the bloodwork was negative. I had been off gluten for 5 days before that. I had decided not to have the biopsy and just try the diet. The first 2 days I lost a lot of water weight and the swelling in my tongue and neck went down considerably. I have been following the diet for 1 month and I actually feel worse. My muscles feel so weak and shin bones hurt. The knuckles on my hands are swollen and they hurt. I am having muscle twitches all over my body. I feel like my body is shaking inside. I can't stop crying. I wake up with bloating and I don't have much of an appetite. I feel like my skin is burning. Any opinions would be welcome. I have started taking iron and vitamin d, cal/mag. I also have to empty my bladder a lot, but that is nothing new.

Thanks

Hillary

Dear Hillary,

I had the bloodwork done twice for celiac disease where I live in British Columbia. Both of those tests came back negative like yours. I also had 2 biopsies done, the first led to the 2nd being done

The Doctors here were unable to diagmose My celiac disease and I had to see a GI in Calgary Alberta. The GI was able to diagnose the celiac disease with bloodwork and the endoscopy. I came home and then the fun started, I felt way worse before I started to feel better. I had extreme muscle weakness, fatigue, dfehydration, in short it was the summer from hell for me. The biggest thing for me wzs getting monthly bloowork done so I knew what was going on. because of the bloodwork I take on a daily basis.....iron, folic acid, calcium, vitamin d, a multivitamin, zinc and magnesium on a daily basis.

Before you start taking vitamins and other suppliments you should get bloodwork done. That way you know how much you should be taking.

Best of luck

Cheers

Mike

Remember you are never alone

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    Thank you so much, cyclinglady. Yes, very helpful! I want to tell her the exact tests I want.  I am thinking I should request: tTG-IgA Total serum IgA Do you agree? I am on a super high-deductible health plan, so I end up paying for all of these, so I don't want to go overboard while still being as sure as I can be. Not related to celiac (as far as I know) but I was also reminded that my sister has the MTHFR gene mutation (homozygous C variant), so I need to ask her to be tested for that as well... She is going to think I am nuts, and that is fine. ;)
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