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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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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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