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Sick And Suspicious

MartyrMom2

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MartyrMom2 Rookie
MartyrMom2
Posted

Hey everyone! I am glad to have stumbled onto this site! I really appreciate the wealth of information and the sense of community here. I am a newbie and have posted under a few different topics already. I hope to not repeat myself, but I wanted to share my personal history to see if any of you think my symptoms/diagnoses (please see my signature or other posts) warrant testing for Celiac Disease or not. I am a 34-year-old female, but my health started to deteriorate 7 years ago. In late Sept.'05, I developed what I thought at the time was a stomach virus. I had pretty intense abdominal pain that radiated to my back and diarrhea. I purchased some Imodium and went about my day. My symptoms lasted throughout the day, only to stop the next, and then return again. My symptoms continued so I consulted a gastroenterologist. In Jan. '06, I had an endoscopy and colonoscopy. I was diagnosed with IBS. I left the office with a pamphlet and a RX for Hyoscyamine. My abdominal pain and diarrhea continued for the next seven years (until present day). I finally discontinued the Hyoscyamine in Aug. '07 due to its ineffectiveness. I might as well have taken a placebo. I was diagnosed w/ hypothyroidism in Oct. '08 and put on Synthroid. While I am thankful to have had an astute physician recommend testing my thyroid (I know some women aren't as lucky), I am frustrated that I do not know the cause of my thyroid disease or my IBS. I am curious to know if it is Hashimoto's or not and furthermore whether gluten is the culprit. I have developed additional symptoms over the years, namely unidentified rashes, unexplained bruising, acid reflux, and lactose intolerance. I am slightly overweight and experience constipation as well, but my view is that w/ having an underactive thyroid, these symptoms don't negate Celiac Disease. My latest complaint is sciatica-type back pain. Let's just say my heating pad is my new best friend! What brought me to the suspicion of Celiac Disease or even gluten sensitivity again is that I picked up the latest issue of Woman's World magazine due to the headline grabber, "Sluggish Thyroid?" Inside it stated than an underactive thyroid might be due to an undiagnosed gluten or dairy sensitivity. I have two young daughters and I want to know if there's even the remote possibility that they have a chance to develop this disease. It wouldn't hurt to have some validation either. I know it seems like I've made up my mind, but after years of being treated like a neurotic nutcase, I suffer from self doubt. I would so appreciate any advice/suggestions any of you have to offer. Many thanks for taking the time to read my novel! :)

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shadowicewolf Proficient
shadowicewolf
Posted

It sounds like you might have it. Stay on gluten until all testing has been done, then go off it.

It is also genetic, there are two genes commonly found within 30% of the population that has been noted to be connected to celiac.

But, yes, with your issues, i would suggest going in and asking to have a full celiac panal done (which for the life of me i don't know off the top of my head) and then, should that turn out positive or inconclusive, go for the endoscopy. Regardless of its results, go try the diet.

I too had massive abdomen issues with my "D". It was random and got to the point where i'd have to take pepto bismol just to go out. Oh its just IBS the doctors said /sarcasm.

mushroom Proficient
mushroom
Posted

Here's the full celiac panel of tests. Do be persistent in getting them all -- many doctors will only do the tTG IgA.

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)
  • Total serum IgA

Get the testing done sooner rather than later - your PCP can order it. The sooner you know the sooner you can start feeling better. Even if your results come back negative you should try going gluten free for at least 3-6 months. And do stay eating gluten until all testing is completed.

Let us know how it turns out. :)

MartyrMom2 Rookie
MartyrMom2
Posted
  • Author

Thank you, ladies or gentleman?! :unsure: I think I will pursue getting the full panel of blood work this week! Be blessed! :D

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  • Posts

    • 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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