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Patty55

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Patty55 Rookie

So happy to have had this site to resort to for the past two years! I have only written twice, the rest of the time just sat with my mouth open while I read about everyone who sounded like me!

I have only for the past two months been unable to shake my symptoms. For one year I was successfully gluten free after hospitalization and miss-diagnosis of Crohn's. Then developed Leaky Gut Syndrome and improved dramatically with nutritional supplements from my chiropractor and Kinesiologist. Two months ago I developed strange new symptoms, aching joints, feeling feverish and started on new nutrional supplements which contained trace amounts of wheat, defatted wheat germ, oat flour, alfalfa flour and buckwheat seed and juice, which my chiropractor tested and told me would not harm me. I immediately began feeling better, but noticed an obvious degree of hair loss and weight gain the day after starting the supplements. Also saw my regular MD who (of course) said it was a virus because of the aching. So I stopped the supplements and the sypmtoms reappeared! My chiropractor insisted I had a bacteria and that I continue the supplement. A week or so later he tested me again and said it was not a virus or bacteria, as he first thought, but a parasite. For the last three weeks he has treated me with Oil of Oregano and acidophilus, which has slightly alleviated the aching, etc. I have also developed a soy allergy, which I identified, thanks to this site, and he confirmed Kinesiologically (whew!). But to date I still have hair loss and the weight which I am not sure if due to the soy I've been unknowingly ingesting or the trace amounts of gluten I took for two weeks.

Can anyone tell me whether these disconcerting sypmtoms will go away soon or I should expect a wait while my body clears itself of the gluten and soy?

Thanks for listening and more for all your information!

Patty


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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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