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Wondering If This Is Celiac

Jodylynn

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Jodylynn Newbie
Jodylynn
Posted

Hi! Im a thirty six year old mother of 4 children and live a pretty hectic life. For many years starting after the birth of my first son ( I was 22) I have been coping with progressiveley worsening diahrea and cramping, gas and bloating. Over the last two years it has become very bad and I went to my family doctor and she said it was spastic colon and it was probably from stress. I dont think that this is what it is. I have hypothyroid and am under weight. I feel like my body cant be absorbing anything because it has been so long since I have had a regular bowel movement. I am fatigued all the time even though Im on medication for my thyroid (diagnosed at 18 yrs old). I have been under alot of stress the past two years but I dont think that is why . I can pretty much eat what I want and not put on weight because it seems to Go right through me and as soon as I eat anything my stomach makes awful bear like growling noises almost immediatly. I am afraid that I am damaging my body by not taking it further and getting another opinion. The doctor didnt take blood or do tests or anything. Am I just a worry wart or could this be Celiac disease? I have considered trying a gluten free diet to see if it helps. How long would it take to start seeing results? I appreciate any advise or opinions on this.

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leadmeastray88 Contributor
leadmeastray88
Posted

Hi there!

Your symptoms definitely give you reason to consider Celiac. You should ask your doctor for the bloodwork and biopsy and you must do so BEFORE starting the gluten free diet because it will wreck the validity of the results.

Also, the fact that your symptoms started post pregnancy is common, lots of people experience a 'trigger' (such as pregnancy, stress, surgery) and then their bodies start to react.

Don't you just want to say to your doctor, "I'm stressed because I feel terrible?!" Don't let your doctor disregard your symptoms because of 'stress', atleast not before exploring other possibilities.

I hope that helps! Good luck :)

-Kim

Lisa Mentor
Lisa
Posted

Hi Jody and welcome to this forum!

Celiac Disease can have up to 200 symptoms and yours certainly fits. It is important to know that if you should pursue testing, that you must remain on a gluten diet. Celiac can be diagnoses through a blood test, endoscopy exam and biopsy and positive dietary response.

If you elect to try the positive dietary response, it may indicate that you have a gluten intolerance, a gluten allergy or Celiac Disease. The others test are more specific toward Celiac Disease.

Many people here are self diagnosed and feel quite comfortable with that choice. Others feel that they need a more specific diagnosis for themselves and their family since it is genetically linked.

The diet is rather complicated in the beginning, but it can be done. With time and experience, it will become second nature. There are a lot of people here who can help you out with that, should you decide this is the avenue you wish to take.

If you would like to be tested, this is what you should ask you Doctor to order:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Good luck and feel free to ask away.

ShayFL Enthusiast
ShayFL
Posted

You and me could be exact twins except I only have 1 child. My pregnancy triggered mine and I was so miserable, I didnt want anymore children. gluten-free has helped me tremendously.

Ask to be tested. And if it is NEG (like mine were) give the gluten-free diet a try. It only took me 2 weeks to see results (no migraines) and about 6 weeks to see changes in my BM's. And I keep getting better everyday.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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