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fredastbury

New member
Joined
Jun 7, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
04/2006
Country
UK
State
Yorkshire
I had all the symptoms: brain fog, tiredness, headaches, depression, joint pain, muscle pain and colitis (IBS) and was eventually diagnosed with FM. Then I found out that celiac disease has the same symptoms. I had a blood test but I passed it, however, I tried out a gluten free diet anyway and three weeks later all my symptoms cleared up.

I don’t have FM after all. I have what is called None Celiac Gluten Sensitivity which has the same symptoms and the same cause (gluten) as celiac but it is not an allergic reaction and cannot be tested for. The only way to diagnose it is with a gluten challenge. The good news is that, like with celiac, a gluten free diet gets rid of the symptoms. NCGS has only been recognised in the last three years so your doctor may not be aware of it and I would recommend everyone with FM to try a gluten free diet for a month. Most Celiac websites have a section on NCGS and there is plenty of advice on what not to eat.

Talk to your doctor first though, they will arrange a blood test. I wasn't celiac so I was put on a gluten fast. It took me three weeks to see any benefit and my symptoms actually got worse during that time. Another thing, weird though it seems, you get cravings for things your allergic too so I felt hungry a lot more than usual because my body was missing the gluten. Three weeks later all my symptoms cleared up. I then pigged out on gluten and two days later I was all crocked up again.

I'm sure there will be lots of people that a gluten free diet won’t help. However, I'm equally sure that there will be more people like me who have been wrongly diagnosed. During the ten years I suffered with FM and colitis, I saw five doctors and nine specialists and not one of them made the connection with gluten.

I know this is not the answer for everyone but I am living proof that it is for some. Believe me, it's worth checking out. It’s a pain having NCGS but trust me, it's a hell of a lot better than FM.
 
I'm really excited that you were able to pin this down and figure out what was causing your pain!

I have to take it a step further than, however. I can't tolerate any grain. I was born allergic to several grains, and thought I outgrew most of my allergies by my teenage years (except corn, which never stopped giving me immediate allergic reactions.) I started eating lots of stuff I used to avoid, and for years I didn't notice any issues. In hindsight, my acne, headaches, eczema, general pain, and bloating issues actually were much worse. I thought it was part of being a teenager, and I just "accepted" that I was weaker than most people and simply had a few health issues. Then in my early 20's I decided to see what would happen if I cut out wheat, since I used to be very allergic to it. I improved, but still had issues. I also tried cutting out dairy. Again, I improved, but still had issues. Then last year, in my mid 20's, I started to get worse at an expediential rate.

I went to a naturopath that was highly recommended by a friend with fibromyalgia, since I too had just been diagnosed with it. He found out that my digestive organs were very weak, and very sensitive to starch, sugar, and dairy. He found other things too, but that's beside the point right now. One of the things he's having me do is a blood type diet (he worked very closely with the doctor who researched and "invented" the blood type diet for 20 years, so he understands it thoroughly.) He tailored the diet specifically for me, because my blood type should be able to eat things that my organs simply can't handle right now, such as berries and squash. So he has me eating ONLY grass fed red meat, organic pasture raised chicken and turkey, a select few tree nuts (the non-starchy ones,) and a few types of vegetables. I've been on the diet for about 6 months and I am making substantial improvements, but it's a slow process and I have a ways to go (chronic fatigue isn't helping.) I have learned that sugar and grains are my worst enemies. I don't have a true allergy to all grains, just wheat and corn, but I can't digest starch.

I don't feel fibromyalgia often, and when I do it's usually very mild. When I do get a nasty flare, it is because I ate some sugar or the weather is making quick heavy changes.

So I highly suggest going totally grain-free. If that helps, then introduce non-gluten grains back in and see how you do. If you're still doing well, then by all means, eat non-gluten grains.
 
Wow, thanks for sharing your story! For years I've suspected I do suffer from celiac disease, but no doctor has ever test me. I guess I should ask the doctor next time I see him about it. It's worth checking. I had heard the symptoms of both diseases are similar... but strangely enough haven't gotten tested.
 
As I have posted above, my symptoms were due to Non Celiac Gluten Intolerance (NCGI) which presents the same as Celiac disease and cleared up after a gluten fast so I’m posting my experience in case anyone else wants to try it.

Testing for gluten intolerance starts with a blood test (to see if you have Celiac disease) and for this you need to pig out on gluten for a few days to make sure you have plenty of antibodies in your system. Eat lots of bread, cakes, biscuits, etc., beer is good too . Visit the doctor for the blood test.

If you are positive for Celiac, your doctor will mandate a gluten free diet for life and your symptoms should clear up after a few weeks.

If you are not positive, you still need to eliminate NCGI with a gluten challenge. You must consume no gluten for a month. Google ‘gluten free diet’ for plenty of websites that tell you what not to eat but make sure to check the ingredient list of all foods, it’s surprising what foods contain gluten: soy sauce, gravy powder, OXO cubes and brown sauce to name a few. It’s a pain but, if you get a result, it’s well worth the trouble. If your symptoms do not improve after four weeks then you do not have NCGI either and you’re stuck with your current diagnosis, sorry.

If you are gluten intolerant, you will notice that your symptoms actually get worse as the days go by. Mine became really bad during the third week. Also, you may feel hungry all the time and nothing you eat seems to satisfy. This is because, weird though it seems, you become addicted to the food that makes you ill. Gluten in this case. After three weeks, your symptoms may start to clear up. This can be sudden or gradual. The first time for me, it happened over night and I woke up feeling fantastic. The next time, the symptoms disappeared over a few days. If your symptoms do clear up – enjoy it for a few days.

Now come the challenge part. You have to pig out on gluten again and see if your symptoms return. If you are intolerant, this will happen after a couple of days. If they do return, congratulations you have NCGI. Now you need to go gluten free for the rest of your life. However, NCGI is not an allergy like Celiac and you may be able to tolerate small amounts of gluten. After three months, you can try adding a little gluten and see what your tolerance level is. You may be okay with the odd pizza or beer but you need to wait a few days after eating to make sure you’re clear. Unlike celiac where a reaction can occur within hours, it takes a while with NCGI before you crock up.

NCGI/Celiac is a pain but at least its treatable without medication.

Fred
 
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