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GottaSki Mentor

Mom, Property Manager -- currently awaiting the results of my biopsy to confirm celiac...been gluten free for 8 days. Praying that this is the correct diagnosis after years and years of docs looking at me with that ok, dear you are either nuts or depressed expression. I know that I have told at least 6 primary docs over the years that I get depressed after being sick for months on end, not sick because I'm depressed. This past year has been the worst of all...horrible bloating, achy joints, weight gain, extreme intolerance of heat (not sure many celiac's have this?) with C, not D....finally got so frustrated I've been like a dog with a bone insisting there must be a blood test that wasn't run on me. After nearly 50 blood tests coming back NORMAL my IgA tissue transglutaminase antibody (tTG) led to the possible celiac diagnosis.


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Bosque Rookie
Mom, Property Manager -- currently awaiting the results of my biopsy to confirm celiac...been gluten free for 8 days. Praying that this is the correct diagnosis after years and years of docs looking at me with that ok, dear you are either nuts or depressed expression. I know that I have told at least 6 primary docs over the years that I get depressed after being sick for months on end, not sick because I'm depressed. This past year has been the worst of all...horrible bloating, achy joints, weight gain, extreme intolerance of heat (not sure many celiac's have this?) with C, not D....finally got so frustrated I've been like a dog with a bone insisting there must be a blood test that wasn't run on me. After nearly 50 blood tests coming back NORMAL my IgA tissue transglutaminase antibody (tTG) led to the possible celiac diagnosis.

We will all pray for you that the doctors will finally have the wisdome to heal you body. I was sick for 16-18 years before I was diagnosed. You are deffently taking the correct steps. Many times, doctors are just to overwhelmed themselves to spend the time to really listen to their patients needs.

emcmaster Collaborator

I'm the head of Accounting for a tech company.

:)

FarmCat Newbie
Thanks everyone for your input. Being on sabbatical with Celiac
Bosque Rookie
I'm up for the commune idea--and I'll do the farming! Seriously.

About 8 years ago I was laid off from my demanding, anxiety-inducing pharmaceutical industry job. I was not able to get back into the professional arena because of the brain fog and anxiety that I now know were the effects that gluten and soy have on me! I have now been working for 5 years at a part-time, low-stress (low-pay) position at my local library. Last year, after eliminating soy from my diet, I felt enough better to start a part-time business as an organic vegetable grower; I sell at the local farmer's market. This year, with gluten out of my diet as well, I feel well enough to expand. Fresh tomatoes, anyone?

I think that I would be more willing to purchase something from someone with Celiac's. Where is your farmers market? I'll take some of those tomatoes!

1morething Explorer

Hi all, I'm a sales rep. for a beverage packaging company. My territory is Eastern Canada so I travel alot. It's not easy going to restaurant. I have to say I get glutened alot. When glutened, I get the C with bloating & pains . Not very comfortable when I'm talking with customers. But at least I'm not worried about having to run to the bathroom. Sometimes I wish that was the case, cause then that would make me pay more attention and be more careful of what I eat :(

Rachel

nb-canada Apprentice

Interesting topic! I am a Purchasing Agent for a hospital. Off work due to recent diagnosis of Hypothyroid and Shingles and contemplating retirement. :D


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Nadia2009 Enthusiast
As many on here, I was misdiagnosed with Celiac
ranger Enthusiast

Thank God I retired way early. I don't know how people work with celiac. All I've done for almost 2 years is stay close to the bathroom! Before that, I had a small restaurant. When I closed it, I decided to retire and work in my garden. That worked for a couple of years - untill the Big "D" hit me. Last year, I got only half of the garden even planted. It was just too far from the house. I've been gluten free for 3 months now and much better, but still not right. I hope I can do the garden better this year- it's more important now more than ever. Not only from the health standpoint, but also because of the rotten economy. Because of my past restaurant experience, I sometimes think about a gluten free restaurant but then remember the 80 hour work week. No, thank you! I'll be happy if I can just work in my garden and maybe creat a little art. My question isn't so much about what you all do, but how do you do it with this illness?

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    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
    • hjayne19
      This is great thank you very much @Scott Adams
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