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angelawest

Help, Please!?

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Im miserably sick, have run out of answers and options, and am in desperate need of advice?

I started suffering from 'Chronic Fatigue Syndrome' and 'Fibromyalgia' 10 years ago w/out any doctor being able or willing to tell me what the 'cause' was. My stomach always hurt, and hurt worse when my condition grew worse, especially under my left rib cage area (even looks swollen there). Doctors just then told me I had IBS~ that it often goes along with CFS/FM. After giving up on doctors, I finally took maters into my own hands and tried anything 'natural' that I could: supplements/herbs/homiopathic remedies, acctupuncture, chelation, colonics, toxic/yeast cleansing, and an organic allergen free diet (this included the elimination of gluten!). After many months of this crazy regimen, I started to feel better (not 100 percent, but functioning again). Well, the costs. time, & energy of all that took a toll, and eventually I went back to my normal ways... not even sure what specifically, of all the things I had tried, or if a combinations of things, helped me feel better... and I did remain 'better'' (never 100%~ but able to function in life again, and even work) for a few years.

Several years later, I am debilitatingly sick again. Had to quit my job. Everything hurts, I'm extremely fatigued, weak & dizzy, Im having terrible heart palpitations, I have a rash on my face (cheeks), and my stomach hurts/is bloated worse than it's ever been (feels & looks extremely inflamed/swollen), even my rectum/butt hurt (I know that's gross, but true =P), ETC. This time, I've been finally been diagnosed with 'real/treatable' issues: Autoimmune Hashimoto's Thyroiditis, Gastroparesis, Small Intestinal Bacterial Overgrowth (SIBO), and diverticulosis. It would make sense that I'm sick because of 'these' conditions, right? It would make sense that my stomach hurt, right? BUT~ the treatments for each of these conditions don't seem to be helping! Is there something more?!?!

I've had blood testing for celiac's many times, always negative! I demanded an endoscopy to rule out celiac, non the less (knowing there are many false negative tests.) My endoscopy showed "inflammation" in my stomach and duodenum and polyps in my stomach.... but normal villi. My GI insists that I do NOT have celiac and that the inflammation /polyps are a result of the gastroparesis and SIBO. But then, why am I not getting better?!

My endocrinologist can't help me anymore, my Rheumatologist insists I simply have FM, and my MD insist's it simply CFS (even questioned the Hashimoto's because my T4 levels deceivingly looked normal... I had referred MYSELF to the endo out of desperation). I've now referred myself to a Lyme Disease specialist (I'll have to pay out of pocket~ my insurance won't cover this doctor). as a last resort since I seem to have no where else to look anymore. BUT, AM I LOOKING IN THE WRONG PLACE??

I DON'T TRUST DOCTORS AT ALL ANYMORE! And, feel as if I'm laying here, dying slowly, and no one is willing to help me any more!

Could I have still have Celiac's with a biopsy result of 'normal villi, but inflammation/polyps"?? Is there any other type of testing that can be done to let me know the truth of whether or not I do have Celiacs??

I'm desperate to get my life back!

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You have been diagnosed with Hashi's auto-immune thyroid disease.

There is enough evidence to show people with an auto-immune disease have a positive result to better health on a gluten free diet.

If you are done with testing, start the diet. Keep a food journal. Your body's response to the diet is your scientific test. The food journal can help you track down hidden gluten and other food intolerances.

Your gluten issue may get a label of intolerance, but it doesn't mean that it makes you less sick when you eat it.

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God, what a nightmare you have been through.

Yes, you could still have Celiac with normal appearing villi.

Just like you can have Hashimoto's with a normal appearing T4.

Since you don't test positive for Celiac, all you can do is go gluten free and I mean strictly so.

If you are sensitive to gluten, then you will be miserable with any consumption of it at all..including traces of it.

I ran the course of Dr.'s too.

I don't have Fibromyalgia after all.

Nor IBS, fungus, CFS, Migraine, Depression, Anxiety, Stomach pain, Digestive Problems,D, Balance issues, Brain Fog...it all resoved for me...without Dr. intervention.

I'm one year gluten free and I feel better all the way around.

The rash took one year to heal.

If that is DH, many with DH do not test positive on the intestinal biopsy and yet they are at higher risk of intestinal cancers associated with Celiac. DH is Celiac. You could try to get a biopsy of the rash on your cheeks.

Barring that, you have nothing to lose and everything to gain by going gluten free.

I lived a nightmare too. But it is over now.

I wish you the best and hope you will try strict gluten free no matter what the Dr.'s say.

It is good for anyone with auto-immune disease. And you may indeed have DH. Look at the DH forum and see if your rash responds to gluten and iodine free. Many Dermatologists don't recognize DH.

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