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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

My Bones Hurt Like An Old Woman
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15 posts in this topic

My bones hurt, I don't know if I should go for a bone scan?

Anything other than walking hurts my body, literally. I stopped rigerous exercise when I was 17. I always thought that I "destroyed" my body from 10 years of soccer and 2 years of cross country, but I guess it was a combination of overworking myself and celiac malabsorption. I also have vein pain in my legs from circulatory problems that my doctor and I suspect are from Celiac internal swelling. My insurance won't cover the veins because they are "cosmetic", but they really hurt, vein doctor agrees that they hurt because of where they are, but insurance doesn't care.

My point was, how do you guys find energy to exercise? What supplements can you use, I checked the health food store yesterday and couldn't seem to find anything. Ensure high protein seems to help me make it through the day, what about you guys?

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Hello!

Hang in there! My bones hurt too. Plus I have had three (all bad) shoulder surgeries, and 6 (all bad) hand surgeries. My husband and I go to the gym but I do the things that are comfortable for me to do. I also have tremendous leg pain and swelling. I think it is circulation and vein problems too. I found that the treadmill is bad for me. My knees and legs hurt way too much so I only do the eliptical machines. I am always tired too but I still do what I can. My iron levels are very low but I have been dealign with that for many years so I guess you just get used to it.

I take naps and my house is not white-glove clean but it is not dirty either. I do what I can when I can do it. Somedays, I have energy and I just don't stop until I am exhausted. Other days, the TV is my best friend.

Good luck to you. This place is wonderful for support. It is amazing how many people are just like me! :D

Jo Ann

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I had bone/joint pain before my diagnosis and a few months after I started the gluten-free diet. The pain eventually went away though. I would recommend talking to your doctor about taking Calcium and vitamin D supplements to help you get better.

For energy levels, I struggled with my energy levels for about 1 year after I started the gluten-free diet. I still pushed myself to play sports and exercise even though it probably wasn't the wisest idea at the time (I often felt like I was going to pass out). Anyway, I am doing much better now. For added energy I find that blueberry smoothies are real energy boosters for me. Here is my recipe;

1 cup of frozen blueberries

1.5 cups vanilla So Good soy milk (good source of calcium and vitamin D)

2 tablespoons of honey

1 teaspoon of vanilla extract

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My bones hurt, I don't know if I should go for a bone scan?

Anything other than walking hurts my body, literally.  I stopped rigerous exercise when I was 17.  I always thought that I "destroyed" my body from 10 years of soccer and 2 years of cross country, but I guess it was a combination of overworking myself and celiac malabsorption.  I also have vein pain in my legs from circulatory problems that my doctor and I suspect are from Celiac internal swelling.  My insurance won't cover the veins because they are "cosmetic", but they really hurt, vein doctor agrees that they hurt because of where they are, but  insurance doesn't care.

My point was, how do you guys find energy to exercise?  What supplements can you use, I checked the health food store yesterday and couldn't seem to find anything.  Ensure high protein seems to help me make it through the day, what about you guys?

<{POST_SNAPBACK}>

I take many supplements but nothing was helping with the extreme low energy - totally woped out. Some days I could barely make it out of bed. 3 months ago I added CoQ10 to my supplements. I improved within two weeks and now I haven't gone back to bed one day in many many weeks. I gardened today for three hours. What more can I say. Try it. Hopefully it will help you too. Claire

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I take many supplements but nothing was helping with the extreme low energy - totally woped out. Some days I could barely make it out of bed. 3 months ago I added CoQ10 to my supplements.  I improved within two weeks and now I haven't gone back to bed one day in many many weeks. I gardened today for three hours. What more can I say. Try it. Hopefully it will help you too.  Claire

<{POST_SNAPBACK}>

Claire,

I have been reading so much here about CoQ10. Can you tell me anything about it? What kind of supplement is it? Sorry to sound stupid but if I don't ask, I will never know. :blink:

Thanks!

Jo Ann

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Claire,

I have been reading so much here about CoQ10. Can you tell me anything about it? What kind of supplement is it? Sorry to sound stupid but if I don't ask, I will never know.  :blink:

Thanks!

Jo Ann

<{POST_SNAPBACK}>

I can tell you that it has done wonders for me - restored my energy level dramatically. I won't run any races but the improvement is remarkable all the same.

It is known primarily as natural boost for energy, as a necessary enzyme for heart health. More recently it has been found to be of great value for those with neurological diseases/disorders.

Celiac patients have very low energy, may also have FM or other autoimune diseases. Some celiacs also develop serious neurological problems.

I am giving you a few web sites that have some good info. Though one or two may be promotional in nature - there info is very good. Claire

Enzymes and Coenzymes

http://shop.store.yahoo.com/nubrain-store/c0q10.html

Life Plus - CoQ10 Plus

http://members.aol.com/lpluby/c0q10.htm

CoQ10 HELPS IN RARE NEUROLOGICAL DISEASES

http://healthfullife.umdnj.edu/archives/coQ10_02_archive.htm

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Thank you! I will check those websites.

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I can add some of the things that work for me:

Protein intake:

shelled hemp seed added to food - daily

rice or hemp seed protein powder (for me 2x's a day - but half dose for now)

(I am allergic to lots of proteins, these work for me)

B vitamins:

sublingular b complex, started off 3x's a day, now down to once a day

Potassium! I take extra on heavy activity days

L-Glutamine - right before work out/activity and then

right after with protein drink.

30- 45 minutes prior to game or work-out, I take some tylenol and

have an energy drink, I warm-up and stretch, stretch, and at the end

of said activity - stretch, stretch.

I totally understand the hurting bones thing - I have ra, fibromyalgia, and some

osteo.....

I just started the co q 10 thing too - bothers my stomach a bit, but hoping for a

noticably good difference.

just my 2 cents worth!

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I think that I am getting "glutened." I am trying in the meantime to eat only non gluten items processed in non gluten facilities, as well as produce and meat. I think that I was getting cross contamination from Barbara's cereals. I eat healthy, I drink plenty of Ensure (at least 1 per day), fruits, veggies, protein (a lot of grilled chicken, steak). I crave meat, I think my iron must be low when I do this. I think I am having malabsorbtion from being glutened. I feel tired for 3 weeks. And it seems like I am being glutened once a month. So, I have one energy week and a few odd days in between. Its the weirdest thing, then again, I guess every health issue that I've had has been. I hate this feeling overtired and aching all over. Does anyone get vitamin injections? I know they have "meal in a bag" IV at the hospital, but can I get a routine one for all the time?

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Alicia,

May I ask the benefits of the L-glutamine? I am very fatigued all the time and looking for something to give me energy. I have read that a lot of celiacs take this.

Also, what brand do you use?

Thanks!

Megan

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Alicia,

May I ask the benefits of the L-glutamine?  I am very fatigued all the time and looking for something to give me energy. I have read that a lot of celiacs take this.

Also, what brand do you use?

Thanks!

Megan

<{POST_SNAPBACK}>

You need to carefully reread all the posts in this thread. Sometimes we can easily miss the obvious.

L-Glutamine[an amino acid] is used by athletes to restore their bodies after excessively high physical workouts . It is used in health care to heal the 'leaky gut' - a condition shared by many celiac and IBS patients. Even people without either of these problems can have LGS - if they are having reactions to foods for which they have become intolerant.

I have taken both L-gluatamine and CoQ10. Refer to my post above on this enzyme. Claire

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When I mentioned bone pain to my doctor (particularly the forearms and lower leg bones), she immediately suspected a Vit. D deficiency. It was extremely low. Within days of taking 400 mg. 2x a day, my back stopped hurting, my fingers didn't feel "arthritic", and of course, my arms and legs didn't hurt anymore either. Of course Vit. D can build up so you need to recheck your level after starting supplementation. Ask your doctor to check your levels.

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Megan:

I don't necessarily take the L-Glutamine for energy - my

b-complex seems to have helped with low energy.

But I do take it for both reasons mentioned by Claire,

leaky gut and high intensity workouts.

When I started back at the gym and playing soccer - I would

feel pretty good through-out the workouts/games. But

afterwards I would "crash" as I call it. I would quickly

become extremely exhausted. I only take one day off a week

from physical activity (gotta do the laundry and stuff).

So I needed to get all facets of vitamins/minerals etc.

to their proper levels for me - lots of adjusting.

FYI - I take Whole Foods L-Glutamine for right now -

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my bones don't hurt BUT i was just diagnosed with pre-ostio. When diagnosed with celiac almost 3 years ago, my D-level was very low. Have yours been checked? its very normal for celiacs. i take in sun daily and take mega doses of D. I also have low energy but i also have type 1 diabetes, also very typical for celiacs. i push myself at the gym for the sake of my heart and bones. that helps me with my energy. make sure your getting flax seeds daily and soy milk if you can. also, magnesium is vital and B12.

good luck

jeanettie

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I'm only 20, but have had 6 knee surgeries (1 ACL repair, 3 for patella maltracking, and 1 each for hardware removal and neuroma excision) in as many years. My intestinal problems started while I was taking massive amounts of Ibuprofen. After about 4 weeks, I connected the two and switched to glucosamine (January) hoping to manage my knee pain. I noticed the gut pain return after over a month on the glucosamine and decided to drop it around 7 weeks in (mid-February). I have since noticed an increase in cracking/grinding in my knee and pain in my fingers (I've jammed, broken or sprained most of my fingers, some 2 or 3 times). My abdominal pain got worse instead of improving. I ended up in the ER the weekend after I dropped the glucosamine. Blood tests, x-rays and ultra sounds were all normal except for a drop in hemoglobin and a mildly elevated sed rate. My doctor prescribed Prilosec, iron and vitamin D and told me to follow up in May. I started experimenting with my diet and noticed some change when wheat-free and then gluten-free.

Reading this topic is making me question if 100% of my chronic knee pain can be attributed to the defects and damage done by the surgeries and if my finger pain is really just early-arthritis. My knee pain has not improved with rehab and seems to be getting worse, which one doctor tells me is all part of the rebuilding process, but 15 months post-op I have to wonder... I'm still researching and experimenting with the gluten-free diet so I'm not sure if it's all just a timely coincidence or if it really is all linked.

Any wisdom?

Also, sorry for the length of this post. I'm still working on streamlining my story.

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