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My Story

kmwondering

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kmwondering Rookie
kmwondering
Posted

I've made a couple of posts here with specific questions about testing, I thought I would take a minute to tell the whole story here, if for no other reason than to vent. Certainly appreciate all the help I've gotten here so far. I gave birth to my second child one year ago (at age 32) and six weeks later, Ianded in the hospital with what turned out to be symptomatic gallstones. Gallbladder removed and follow up with the GI found that my liver enzymes keep fluctuating in and slightly out of the normal range, which has prompted much more testing. Normal ultrasound, normal mrcp, normal endoscopic ultrasound tend to rule out an obvious physical cause. I take no medication and no alcohol and don't have diabetes. Blood testing has found no evidence of hepatitis, wilson's, hemochromatosis, or autoimmune liver disease and has, thus far, found no celiac, but I'm thinking the celiac portion of testing might just be incomplete. I detailed that in another post. I have normal IGA and negative ttg-iga and dgp-iga but no other tests were done.

The more I read about celiac, the more it seems to fit lots of things that seemed unrelated. Lifelong history of migraines, low bmi despite the ingestion of large quantities of food, low cholesterol, low blood pressure, not anemic but always in the low range, easily dropped potassium, "IBS" for my entire adult life that can be quite horrible at times (colonoscopy found no large bowel problems), gas, bloating, tooth enamel problems, bouts of debilitating anxiety that seems to mirror, symptom for symptom, magnesium deficiency. Never had the mag tested when in one of those phases but have had it tested at other times and it is always absolute bottom normal range and taking Mg supplements decreases my day to day anxiety and heart palpitations....I think that's all :)

I'm in an insurance hole right now and only have catastrophic coverage so I'm at a standstill in the testing that started last year. I'm hoping that my GI will be open to exploring the diagnosis of celiac more thoroughly when I am able to have all the testing covered. I will definitely do a gluten free trial either way, but I'd like a positive diagnosis in hand if I do have Celiac. I think it will be easier to convince doctors to monitor my children and it will be the only way I would convince some family members to get tested as well. Thanks for reading :)

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eatmeat4good Enthusiast
eatmeat4good
Posted

I think you are on to something with your list of symptoms.

Don't be surprised if your family doesn't get tested even if you get diagnosed with it.

Seems pretty common around here. My family is the same.

And even though I am diagnosed the Dr. doesn't want to test my son. It makes no sense at all. So we saw another Dr. and they said what symptoms does he have? Well, you and I know that Celiac can be symptom free. But I said he has leg aches and asthma and depression. Those are not celiac symptoms I was told. Luckily my son agreed to trial gluten free and all his symptoms went away. We decided a Dr. didn't have to tell us that he was Celiac...we already know. For what it is worth, vitamin D deficiency can cause asthma-like symptoms so that may have been it. But it doesn't excuse the years of prednisone, inhalers, and anti-biotics. Just saying....sometimes you have to make your own decision. I hope you get your testing and diagnosis, but even if you don't...don't give up on gluten free. Might be best for you and the kids regardless of what Doc says.

kmwondering Rookie
kmwondering
Posted
  • Author

I think you are on to something with your list of symptoms.

Don't be surprised if your family doesn't get tested even if you get diagnosed with it.

Seems pretty common around here. My family is the same.

And even though I am diagnosed the Dr. doesn't want to test my son. It makes no sense at all. So we saw another Dr. and they said what symptoms does he have? Well, you and I know that Celiac can be symptom free. But I said he has leg aches and asthma and depression. Those are not celiac symptoms I was told. Luckily my son agreed to trial gluten free and all his symptoms went away. We decided a Dr. didn't have to tell us that he was Celiac...we already know. For what it is worth, vitamin D deficiency can cause asthma-like symptoms so that may have been it. But it doesn't excuse the years of prednisone, inhalers, and anti-biotics. Just saying....sometimes you have to make your own decision. I hope you get your testing and diagnosis, but even if you don't...don't give up on gluten free. Might be best for you and the kids regardless of what Doc says.

Thanks for your response. I'm glad that gluten free helped our son. You are right, I don't need a diagnosis to go down this path and I'm going to give it a shot regardless. Can't hurt :)

eatmeat4good Enthusiast
eatmeat4good
Posted

I hope it will help you as much as it helped us. Good luck to you! I hope you will post back on how you do!

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    • 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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      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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