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Goku

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Goku Newbie

Hello Everyone,

First of all I wanted to thank you all for sharing your advice, your stories, and your time on this forum because it's definitely helped me out a lot. It's been really good for me to hear stories similar to mine and share in those experiences with people as I honestly do not know people around me who suffer from the issues we do or can even sympathize with what's going on. Even your signatures are encouraging to me because it lets me see how I'm not the only one! My signature should disclose my discoveries thus far.

So here is my dilemma. I have had several appointments, out of pocket, with a nutritionist who in my experience with had initially been positive but in terms of progress had become negative. I'm very thankful the nutritionist discovered my intolerances and showed me the link of emotional issues/depression to the gut ... But she has not really advised me much beyond the elimination process and it has now been about four months. Now I am developing intolerances to the foods I have been eating in the elimination process (which I was warned about).

This nutritionist has also consistently recommended (until I negatively reacted often enough times) supplements that contain ingredients my IGG showed! I thought that to be odd, I was told they were "bio-available" therefore I should not react to them, which I did not understand, and oh boy did I react to them. One had parts of soy in it (MediClear), the other was called "Juice Plus" containing more than one element of foods I am allergic to (which this company just seems shady with no details of the amount of what's inside the capsules except food, and does pay the people who recommend it. On it are pictures of pineapples and other fruits and veggies that I have allergies to like kiwi). The other product was "Heartburn Free" which resulted in reactions because I'm allergic to oranges. I also used another product they personally make and had issues with it so had to stop taking it.

I kept good faith for a while but I'm definitely staggering along now and fairly discouraged, especially because I'm paying out of pocket and I'm not getting answers to my questions regarding my issue. Now I am doing even more studying and investigation myself but am short in understanding and resources. I know no one is perfect but I want to hear input from people who are more seasoned in these matters.

And doctors, well you're all too familiar with that. I've been to plenty. I have a history of GERD and Barrett's, healed by God's grace. They either don't believe in food intolerances like this, tell me "I'm fine" run bloodwork that checks out, scream "quick get back on antacids that give you more heartburn!" blah blah waste of my life blah BLAH!

Two problems...

1. I don't know which to go to (Doctor/Nutritionist/Both?) and who specifically could help in my area. I have insurance. If you could be as specific as possible with your recommendations (Name/Practice) and your personal experiences would be worth gold. I would really appreciate it as I plan on making the decision very soon and am waiting to hear from this forum before I go out to make appointments again.

2. And I don't know what the next step is beyond elimination ... and it seems I have less time than I thought since I am developing issues with rice which was my substitute. I was told I will not get better by just removing foods but need to repair. I know the four steps only by name but don't know anything else about them or how to tackle them. Any info, other threads, or resources you have for someone like me please let me know. I have been taking enzymedica digest gold which has allowed me to eat more normal portions of food but that's my latest positive discovery.

Please also let me know if I should repost this question in another area of the site for the best amount of responses.

Thank you so much!


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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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