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New to Gluten free food

Bevsiegirl

By Bevsiegirl
in Coping with Celiac Disease

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Bevsiegirl Newbie
Bevsiegirl
Posted

Hi im Beverley and im new to posting on the group 
recently i've been very unwell starting with severe stomach pains after eating i then went onto developing central back pain 
On returning home from my holiday that i had to cut short due to the pain barrier i went straight to my GP who then took a blood test & sent them off to be tested , they came back normal except for 1 that indicated i was 4.7 borderline diabetic & that my IGA levels had gone borderline . i was then sent for a Cat  Scan to check for any stomach cancers that came back on ok . they then sent me for my 6th Endoscopy & that came back as Low Lax &  gastritis . i had to wait for 6 weeks for the biopsy results they came back ok all 6 :( now don't get me wrong most be people would be over the moon with that result :) to me it left me empty & confused its not not hitting home it come back negative ,,
before the tests i had been diagnosed with B12 Pernicious Anemia , i get regular B12 injections for life at my GPs surgery 
I suffer with Gastritis of the stomach lining & i take Esomeprazole 40mg daily 
then i started with the dreaded mouth ulcers :( 
7 years of constant mouth ulcers 
bloated stomach from the age of 24 im now 53 & always had stomach pains 
Anxiety :( developed into phobias 
painful joints 
Racing heart ( in & out of A&E departments for years eventually placed on Bisoprolol heart meds to slow the heart down 
Painful feet / toes 
itchy skin 
Throat problems 
reflux 
Fatigue 
Tooth enamel loss 
Dermatitis on body & in my hair ( nape of neck ) 
Burning sensation in my hair / head 
Headaches 
Blurred vision 
In and out of hospital feeling like a hypochondriac & very embarrassed by it all especially when they look at you & say we cant find anything :( 
At the moment i'm still trying my hardest to follow a gluten free diet although the biopsy tests suggest i'm not a celiac  the moment i eat gluten i'm bad again ..even on the diet if i accidently eat cross contaminated im poorly again ..im not yet sure if im Lactose intolerant :( 
I'm desperate for help since i've now started with an unusual cough its tickly & irritating & my throats sore :( my GPs sent t a throat swab off i get that result tomorrow hopefully it suggests something :( Ive just had a chest & throat xray that was clear :) no blockages :) when i eat my throats closing up & i feel short of breath its scary ... ive changed all my make up to Gluten Free ..changed my Shampoo to gluten free .. i still drinking coffee ... im eating lots of fresh fruit & veggies ... meat & fish .. 
Im at at lost end in fact im at my lowest i'm tired grumpy annoyed stressed the list goes on !! 
Has anyone on the group been through the same thing & the tests reveal nothing ? 
i'm back over the hospital to see the Celiac doctors within the next two weeks hopefully i'll be tested again :) 
Thank you for letting me ramble on guys :) Im sending you a big hug if you guys feel the same way i do :( 
Bevsie x 

 

k 

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kareng Grand Master
kareng
Posted

If you are eating gluten free, your celiac blood antibody tests should be negative.  Just something to keep in mind.

Ennis-TX Grand Master
Ennis-TX
Posted

Might be a allergy or intolerance to some odd common food. I get mouth sores/blood blisters from eating stuff with corn and a high fever. I also get bloat issues with sugars, starches, quick carbs that lead to stomach and gut pains, bloaty feeling, gas, and sometimes even distends the gut. We all have our unique issues, I am sure some others might give you some more pointers here. I might suggest a full allergy test, also check for any vitamin deficiencies, might be a magnesium issue with the joins/skin feeling. Could also have a few other issues from lacking enough of vitamins/minerals/fats that work in combination with each other for your body to process, or enzyme issues where you would have issues processing foods and breaking them down correctly. The issue could also lie perhaps in your gut and the mircobiome there being out of wack in which case probiotics might help. Consulting with a dietician and building a diet around what your body needs should help a lot. I wish you luck and perhaps someone a bit more experienced can help narrow it down more of give better suggestions.

GFinDC Veteran
GFinDC
Posted

Hi Bevsiegirl,

Here are the antibody tests for a celiac reaction.  Each of these tests can be either positive or negative, or they can all be positive.  If any is positive, then an immune system reaction is happening.  Except total serum IGA, that is just a test to prove your immune system actually makes IgA antibodies.  Some people don't make them.  If you don't make IgA, then the IgA tests are useless.

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA

Deamidated Gliadin Peptide (DGP) IgG

Total Serum IgA

Each of these tests has a range of values for normal and positive levels that is set by the particular lab.  So the result ranges are key to interpreting the test results.

It sounds like gluten is affecting your system if it causes you to feel poorly when you eat it.  Nutrient deficiencies are also a sign of possible celiac disease.  You have other symptoms that could be caused by celiac also.

There is a gene test for celiac, but it doesn't prove you have celiac, only that you are in the group of people who could get it.

Since celiac testing depends on the antibodies being in the blood stream, it's necessary to eat gluten for 2 weeks before an endoscopy and 12 weeks before blood tests to get accurate results.  That period of time is called a gluten challenge.

The reality is that not all people pass the current testing, even if they have celiac disease.  Some people fall into the 2% error rate on some tests, or the 1% error rate on other tests.  But they still have symptoms.  The celiac tests we have now are just not perfect.  So it may become a situation where you know yourself that you have a gluten problem, but the medical testing won't show it, except in round about ways.  In that case, you can still go gluten-free and get healthier regardless of what the medical tests say.  There is no law against that.

There is a newbie 101 thread stickied atop the Coping With forum section.  You can probably get some good info there.  If you decide to go gluten-free without testing proof, you can always go back and get your nutrient levels verified after 6 months to see if they improved.

I suggest eating mostly whole foods like meats, veggies, eggs, nuts and fruit for the first 6 months.  eating whole foods is a good way to start the gluten-free diet and avoid possible cross contamination issues.

Welcome to the forum Bevsiegirl! :)

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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      Son's legs shaking

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