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Newbie...not Yet Diagnosed


labsr4me2

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labsr4me2 Rookie

Hello everyone,

Here is my story. I would appreciate any input.

As far as I can remember, it started about two or three years ago. I decided to start eating healthier and working out more. Once I did that and lost about 20 pounds, I noticed that I would get sick to my stomach when ever I would eat greasy foods and sweets. (I thought nothing of it except my body was no longer used to the junk).

Then back in December, every time I ate carbs (so I thought) I would get sick to my stomach, exctremely light headed, tired and weak. I started paying closer attention to my foods and symptoms. It ended up being more when I would eat diary and breads.

I got scared and went to urgent care. They did a blood panel and checked for diabetes and thyroid issues. Those tests showed nothing. I waited it out for a few weeks and then went to the doctor. They ran the same tests and came back with the same results.

I decided to give up (due to the doctors not acting like it was that big of a deal).

Then towards the end of March or beginning of April. Some one had suggested that I go off of Gluten. I did that and my symptoms continued. I finally removed diary also and after a while I started to feel better.

People kept telling me I had to go back to the doctor and get the official testing done for Celiac disease. So I did some of my own research and called the doctor to have a blood test done.

The doctors office was not really sure how long I should go back on Gluten for before the test so they recommended two weeks. I did not make it through a weekend and again removed gluten from my diet.

So I continued to research.....I finally found some things in my research that explained some symptoms that I have had for (what feels like forever) probably my whole life. I get (what I thought to be) eczema. Recently I have been getting a rash on my scalp that tends to keep my up at night and causes sores. I thought I just had a really dry scalp.

The readings have suggested I get a skin test done for DH. I am curious if:

1. is it necessary (my husband says "NO, just stay off of gluten and you will be fine.")

2. How long do I need to eat gluten before the test?

3. How do I find a doctor that knows about this and that can help me without running a bunch of unneeded tests?

4. Should I have my son tested as well. (he has no issues except he used to have the itchy scalp thing as well)

The other question I have is that in my readings it talks all about how symptoms are not instant and it talks nothing about the "funky" head feeling that I have been having. I can take about 1/4 tsp of something and instantly feel like I am on some sort of cold medicine or drunk. My head feels heavy. I get extremely tired and dazed. I just feel like I am floating....??? Is this even a symptom???

Please help???? :-(


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MySuicidalTurtle Enthusiast

It sounds like you have a lot of Celiac symptoms! The whole getting officially diagnosed thing is really up to you. If you do not need that confirmation and the diet is working great, then why go on gluten again? Say you do need more proof, then you have to eat gluten and I think for about 2 weeks. Some doctors can see the improvements from the diet, though. You could get your son tested since he is still eating gluten. Celiac Disease is genetic and the sooner you know, the better. However, you also might just have a gluten and casein intolerance, so, just do what feels best for you.

Good luck!

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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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