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Is Celiac A Possibility Here?

Rachel--24

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Rachel--24 Collaborator
Rachel--24
Posted

Hi,

I've been suffering without a diagnosis for almost 3 years now. I've had too many symptoms to name and after learning about celiac disease I was convinced I had it. I've been tested for lots of things but everything comes back normal. I tested negative in blood test for Celiac last year. I have malabsorption problems (94 lbs. w/ fluid retention). I think many of my symptoms are due to vitamin/mineral deficiencies. I have constipation and only occasional diarreah. I get bloated and have gas but this is not limited to gluten consumption...it can happen with other foods as well. I have tiny itcy bumps on both arms that come and go. Stool test did not show malabsorption even though I have drastic weight loss, pale fatty stools which float and undigested food in stools. After negative blood test I started eating normally again and within 3 months I was very ill and thought I might die...I felt allergic to everything and got bad chemical sensitivities as well as food sensitivities. I decided to treat myself for Candida eating only organic meat,veggies,fish and eggs and I immediately noticed an improvement. Most of my symptoms went away but I am still very sensitive to chemicals and foods. I havent gained much weight but my body somehow seems more healthy...like the fluid is being replaced with a more healthy weight. For some reason this keeps changing...I will feel as if I'm healing but then all of a sudden the fluid comes back, stools start floating, bumps on arms come back and I look malnourished. This usually happens when I try to add new foods into my diet following Candida safe recipes. I just started thinking of Celiac Disease again and I'm thinking about the things that I ate which brought back symptoms...I thought in following the Candida diet I was also glutenfree but now I'm not sure. I made some muffins and pancakes using ingredients I know are safe except I'm not sure about Spice Islands Vanilla Extract (is this gluten-free?) Also I reacted badly to Buckwheat. Can buckwheat cause problems for people with celiac disease? When I get these reactions my weight drops no matter how much I eat and I feel pretty bad for almost 2 weeks...then my stools will start to appear more normal and I'll look less malnourished. I bought a new lipstick and ever since I started using it I'm sick again but I'm only eating meats, veggies, fish, pumpkin seeds and almond butter. I stopped eating eggs due to possible sensitivity. Can these few incidences with vanilla extract, buckwheat and lipstick which contains gluten cause me to be ill if I were to have celiac disease? I'm still wearing the lipstick (the brand is Cover Girl). I do believe that Candida is an issue for me but I'm wondering if celiac disease could really be my main problem even though my blood test was neg? I'm thinking about ordering tests from Enterolab but thought I'd mention it here first. Does celiac disease seem likely or not? Is Enterolab reliable? Is the stool test somehow more reliable than the blood tests I had done?

Any help would be greatly appreciated as I am getting very frusterated...I was perfectly healthy until 3 years ago and I just want answers so that I can adjust my diet accordingly. Even though I'm reactive to sooo many foods my IgG food sensitivity test showed NO sensitivities whatsoever. If I had celiac disease wouldnt this test have shown a sensitivity to wheat?

Thanks in advance for any help with this.

-Rachel

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KaitiUSA Enthusiast
KaitiUSA
Posted

Were you gluten free at the time of testing? That can throw testing off. You have to be on gluten for about 3 months prior to testing. If you have celiac the only thing that would show that is a celiac test...other testing would not show anything to prove that. what tests for celiac did you have done? some tests are better than others and some doctors do not order the full panel.

Lipsticks, shampoos, soaps, all that stuff can cause reactions if you have celiac disease. The itchy skin bumps are probably dh which means you have a skin reaction to gluten as well.

Enterolabs are great. Even though some doctors do not accept them yet , I find it to be an awesome test and do recommend it.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Katie,

Thanks for your response.

I was gluten free only for about 2 weeks at the time of testing...this does not include cosmetics though. I had blood tests done for antibodies. I dont remember exactly what was checked.

I feel certain that Candida, Celiac or both is whats making me sick. I also have Graves disease.

The first time I got the bumps on my arms I thought it was poison oak...this was before I started the diet. Does DH resemble poison oak? Can it spread when you itch it? Now I just leave the bumps alone and they stay small and dont spread as long as I dont scratch them. Its definately not poison oak...its a reaction to something I'm ingesting.

Is buckwheat a problem for anyone with celiac disease?

Also do alot of Celiacs have Candida as well?

I think I'll go ahead and order Enterolab tests...right now I'm waiting for Candida test results. Between the 2 tests hopefully I'll get some answers.

As far as food goes I'm pretty sure I'm gluten-free for 3 months now. Still not sure about Spice Islands Vanilla Extract though. I'll have to find out which cosmetics are safe if I want to go all the way with this. Some of my supplements may contain gluten as well. I'll have to investigate everything.

Thanks,

Rachel

KaitiUSA Enthusiast
KaitiUSA
Posted

Candida and Celiac are related. I was treated for Candida with antibiotics. Also, Graves Disease, which I also have, is HIGHLY connected with Celiac.

Being gluten free for 2 weeks can alter results. You should have the equal to about 3 pieces of bread a day so even though you did not eliminate the cosmetics , if you were besides that gluten free before testing, that can be a problem.

You sound exactly like me before I was diagnosed.

Yes, the bumps are itchy. I was not diagnosed with DH because I never had it looked at but I will get itchy bumps that look like poison and they will come for a little bit and get really itchy and then they would go away. This happens whenever I am glutened.

The complete blood panel for celiac consists of the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Try to find out which of these you had...because some are not as accurate as others.

Buckwheat just got a bad name...it is gluten free and is not associated with wheat :D

Gluten can be in everything from shampoos, soaps, and all that to lipsticks etc. You just need to check everything.

Feel free to contact me if you need anything

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Thanks again for your help Katie,

I called to find out exactly what blood tests were done.

Anti-Gliadin AB (IgA)

TTGA

Thats all I was told but they're going to mail these results to me. Would these have been sufficient tests or should I doubt the neg. results based on being gluten-free for 2 weeks?

So far I have found that my lotion and conditioner both contain wheat germ oil. I'm sure my lipstick and make-up is not gluten-free but I still have to make those phone calls to be sure...not throwing anything away just yet.

Could my hair conditioner and lotion be making me this sick? I have burning sensations on my face and in my mouth and eyes. Also my joints ache and I have malabsorption. Could the lotions etc. alone cause malabsorption just the same as if I was eating gluten?

Thanks,

Rachel

KaitiUSA Enthusiast
KaitiUSA
Posted

Yep, they could be making you sick if you have celiac. I had a gluten incident where I was gluten free but I was getting a reaction from something. It turned out my lip balm had vitamin e derived from wheat and that was causing my reaction! Just that little bit can really effect you. It also does take some time for symptoms to go away...it took me 3 months to feel better but 8 months to get back to normal...everybody varies with times though.

Being gluten free for 2 weeks could effect your tests. Even if they are negative, you still could have it but maybe at beginning stages.

An Enterolab is a good option and a gene test would help to. If you do not have the gene you are 99.9% likely not to get celiac. If you have the gene you could have it activated at any time.

It does sound like you have celiac or some gluten problem going on. You can find out all about products on here that you can have.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Katie,

You've been a great help to me today!

I ordered the full panel including the gene test and a milk sensitivity test.

I actually hope I have Celiac, which may sound strange, but after all I've gone through it would be a relief. Also I'd get to eat alot more than what I'm eating now while on the Candida diet. The gluten-free diet seems like paradise in comparison.

If I do have Celiac it would make sense since it started during a very stressful time in my life and also the same time I was diagnosed with Graves. I smoked for 14 years and was perfectly healthy then when I quit all these horrible things happened to me...I always found that strange. I read on this forum today that smoking can actually prolong Celiac from showing up..have you heard this before? If I'm Celiac all the pieces will finally fit together and I'll be able to make sense of all this for the first time.

Thanks again,

-Rachel

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