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Hoping To Find Answers.

Boatguy

By Boatguy
in Coping with Celiac Disease

Recommended Posts

Boatguy Newbie
Boatguy
Posted

Hello. This is my first post. (I think)

I have celiac disease. I have been symptom free for a long while. My wife and I were so happy that I was symptom free because we struggled with gluten and CC for a long time.

The other day I found myself with terrible symptoms. Of course we immediately tried to determine the cause. We seldom go to restaurants because of frequent cross contamination. And my diet has not changed one bit. There was only a single change we can come up with. That change is in one of my BP medications.

When my wife picked up my Carvedilol/coreg the pharmacist said, "These pills look different, but don't worry, they're the same." Okay, we have heard this about medications before and it never caused a problem.

I take two of these sort of large pills per day. If the binder has been changed to one related to wheat gluten this is the source of my problem.

Thing is, it took ages to get my BP under control using a combination of meds.

Anyone have suggestions? Thank you very much for your assistance.

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shadowicewolf Proficient
shadowicewolf
Posted

They probably gave you a genaric form of the pill. You ought to call the pharmacy and ask them who the manufacturer is and then call them.

Another thought i had would be you could be developing a new intolerence to something. It happens ya know?

Adalaide Mentor
Adalaide
Posted

I will never, under any circumstances, fill a prescription without verifying with the manufacturer first that it is gluten free. I only take one medication on a regular basis as this point, every month when I refill it I verify that the manufacturer hasn't changed. I also call the manufacturer every three months to verify that it continues to be gluten free. I'm also possibly the most paranoid person I know. I do occasionally need to fill a prescription that I will only fill once, steroids, antibiotics, that sort of thing. I find that I frequently have to pharmacy hop to find a manufacturer I can trust, or even contact sometimes. (There is one in India without a US number, I can't wait for an email from India to fill an antibiotic or steroid, I need a human on the phone immediately.)

I would call the manufacturer of the pills right away tomorrrow. If you need to call your doctor for a sooner than usual refill, do so. Call around to local pharmacies, find out what manufacturer they use for that prescription or if necessary have your doctor prescribe the brand name. When you go in to drop off your prescription then again before you pay, verify the manufacturer. Paranoid? Yes. But really, is it worth being looked at like you're a weirdo to avoid what you're going through now?

ncdave Apprentice
ncdave
Posted

use google an do a search for pill id, it"s pretty easy to find the mfg. then call ! my antibotics changed color, the doc assured me they were ok They were not ok !!!!

Boatguy Newbie
Boatguy
Posted
  • Author

Thanks, everyone.

We are still working on a solution. I quit that particular Carvedilol pill. I see my doctor on Thursday. Sometimes things don't work out as we wish, especially down in the sticks where we live.

Ed in Baja Rookie
Ed in Baja
Posted

You might consider at least temporarily eating a vegan diet...I lost a ton of weight and bp dropped too.

dreacakes Rookie
dreacakes
Posted

What were your symptoms? Some meds can cause inflammation in the GI tract, and cause nutritional deficiencies.

If you are interested, there are natural ways to lower high blood pressure.

This website is a fantastic resource for nutritional and health information: Open Original Shared Link

I also found this article on how a study found that a blood pressure medication caused symptoms similar to celiac. Really interesting...

Open Original Shared Link

I hope you get it figured out and feel better soon!

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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
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      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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