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Help, Please!?

angelawest

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angelawest Newbie
angelawest
Posted

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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mommida Enthusiast
mommida
Posted

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.

eatmeat4good Enthusiast
eatmeat4good
Posted

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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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