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Symptoms

kimy

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kimy Rookie
kimy
Posted

I have a lot of questions about celiac disease. I am hoping that someone can help me. For years I have been dealing with stomach issues. I have constipation a lot with every other day stomach cramping. In 2008, I started having joint pain. Went to doctors and they ran all kinds of test and told me I had fibromyalgia. The medicine they put me on did not work at all. In 2010 I went to a gastro doctor and he did a biopsy before doing any blood work. They said I was negative for Celiac disease. In 2010 I then got pregnant and the joint pain went away, but the stomach issues did not. I also suffer from extreme fatigue. I have a doctor appt in a week, to run all kinds of tests, such as vitamin levels. I have in the past few years also had low vitamin D levels and anemia. Do you guys think I should ask for blood testing for Celiac? Are the symptoms I am having Celiac symptoms? I would appreciate any input. Thanks so much in advance.

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mommida Enthusiast
mommida
Posted

I would ask to be tested for Celiac again. There are unfortunately a lot of uniformed doctors. it is possible that this doctor just did not have the proper training to take the neccessary amount of biopsies.

you need to be eating gluten for the tests.

Roda Rising Star
Roda
Posted

Yes I would ask for the blood tests again. Unfortunately when you had your scope your doctor may not have taken enough samples. Celiac damage can be spotty. A minimum of 8-11 samples need to be taken. Even then you could get a false negative.

The blood tests to ask for are:

total IgA

IgA/IgG tTG(tissue transglutaminase)

IgA/IgG DGP(deamidated gliadin peptide)

IgA EMA(endomysial antibody)

After you finish all the testing you want, give the diet a good three month trial. You don't need a doctor's permission to try it. A lot of time your body will give you your answer. It is common with celiac to be deficient in vitamins/minerals and anemic.

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  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Rebeccaj's topic in Super Sensitive People
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      symptoms.

      Yes, except for the most sensitive, cross contamination from airborne gluten should be minimal. Highly sensitive people may have nutritional deficiencies. Many times their bodies are in a highly inflamed state from Celiac, with high levels of histamine and homocysteine. Vitamins are needed to break down histamine released from immune cells like mast...
    2. trents
      - trents replied to Rebeccaj's topic in Super Sensitive People
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      Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and...
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      Hello, @NCalvo822, Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure. These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract. Joints can ache, thyroid problems or the pancreas can develop. Ataxia is just one of over two hundred...
    4. knitty kitty
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      symptoms.

      @Rebeccaj, When you smell toast or pasta cooking, that means that particles of that food are floating around in the air. Airborne gluten can then be inhaled and swallowed, meaning the food particles get into your digestive tract. If you're careful to avoid gluten and are still having symptoms, those symptoms could be caused by vitamin deficiencies...
    5. Rebeccaj
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      symptoms.

      ok thanks for your advice. But my question was what happens when someone you know in a house is cooking pasta or toast that's flour Airbourne without eating.?
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  • Posts

    • knitty kitty
      symptoms.

      By knitty kitty · Posted

      Yes, except for the most sensitive, cross contamination from airborne gluten should be minimal. Highly sensitive people may have nutritional deficiencies.  Many times their bodies are in a highly inflamed state from Celiac, with high levels of histamine and homocysteine.  Vitamins are needed to break down histamine released from immune cells like mast cells that get over stimulated and produce histamine at the least provocation as part of the immune response to gluten. This can last even after gluten exposure is ended.  Thiamine supplementation helps calm the mast cells.  Vitamin D helps calm the immune system.  Other B vitamins and minerals are needed to correct the nutritional deficiencies that developed while the villi were damaged and not able to absorb nutrients.  The villi need vitamins and minerals to repair themselves and grow new villi. Focus on eating a nutritional dense, low inflammation diet, like the Autoimmune Protocol Diet, and supplementing to correct dietary deficiencies.  Once your body has the vitamins and minerals needed, the body can begin healing itself.  You can have nutritional deficiencies even if blood tests say you have "normal" blood levels of vitamins.  Blood is a transport system carrying vitamins from the digestive system to organs and tissues.  Vitamins are used inside cells where they cannot be measured.   Please discuss with your doctor and dietician supplementing vitamins and minerals while trying to heal.  
    • trents
      symptoms.

      By trents · Posted

      Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and countertops. And what about that toaster you mentioned?
    • knitty kitty
      Newly Diagnosed

      By knitty kitty · Posted

      Hello, @NCalvo822, Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure.  These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract.  Joints can ache, thyroid problems or the pancreas can develop.  Ataxia is just one of over two hundred symptoms of Celiac Disease. Some people with Celiac Disease also make tTg IgA 6 antibodies in response to gluten exposure.  The tTg IgA 6 antibodies attack the brain, causing ataxia.  These tTg IgA 6 antibodies are also found in people with Parkinson's disease, though they may not have Celiac Disease.  First degree relatives (parents, siblings, children) of those diagnosed with Celiac should be tested as well.  Celiac is genetic.  Your mom and sister should be tested for Celiac, too!   Definitely a good idea to keep to a gluten free diet.  
    • knitty kitty
      symptoms.

      By knitty kitty · Posted

      @Rebeccaj,  When you smell toast or pasta cooking, that means that particles of that food are floating around in the air.  Airborne gluten can then be inhaled and swallowed, meaning the food particles get into your digestive tract.   If you're careful to avoid gluten and are still having symptoms, those symptoms could be caused by vitamin deficiencies.  
    • Rebeccaj
      symptoms.

      By Rebeccaj · Posted

      ok thanks for your advice. But my question was what happens when someone you know in a house is cooking pasta or toast that's flour  Airbourne without eating.?
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