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Scheduled for biopsy...

tooth-whisperer

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tooth-whisperer Apprentice
tooth-whisperer
Posted

Well, I had my first appointment at the specialist's office on Christmas Eve, and am glad to say I had a really nice PA to sit down with me.  Finally, someone who is concerned about my symptoms and agrees that it sounds like more than "just reflux."  She ordered some lab work, some of which is still outstanding - so far the only result I have is a slightly low IgA (56, normal 60-350).  She didn't order the full panel, but she did go ahead and schedule me for biopsy on the basis of my symptoms, which was a big relief for me, so I didn't raise a fuss about the blood work.  The biopsy will be definitive, and I'll feel better having it done than relying on blood tests.  They're also going to take esophogeal samples to test for Eosinophilic Esophagitis.  As a final blessing, she scheduled my scope with a doctor who I've heard is very good, and who I also found out is celiac himself, and it's a passion for him.  The only bummer is I have to wait until the end of January, but it'll be worth it.  I just hope they find something, because I know something is going on, and the mental aspect to this is driving me crazy.

I had a rough couple of days symptom-wise over Christmas and the weekend.  I was having a hard time staying awake, dizzy and faint, and also my stomach felt like it was wound up like a rubber band (no pain, just a very unsettled feeling).  Thankfully I got some sound sleep lastnight, and lots of it, about 12 hours.  Sometimes I feel ok, and feel like I'm making this all up in my head, but then sometimes the problems flare up again... I just want answers!  I hope this is the final stretch.

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manitourose Newbie
manitourose
Posted

You're close to knowing, just remind yourself of that. It's hard to not get overwhelmed, let your mind wander and feel like the time is slowly ticking! I completely can relate. My endoscopy biopsy was the 16th and I have an appointment for my results on the 29th.

My only advice would be to be sure they cover their bases biopsy wise, celiac standards and the esophagus as you mentioned. Being that your doctor is a celiac as well I'm sure he is fairly attuned to this concern, but I'd remind him. If your biopsy comes back positive or even negative, it doesn't hurt to push for the full panel. Unless of course insurance doesn't cover it, than its understandable. It's nice to know a starting point with the blood work, especially if you are diagnosed with celiac.

The waiting is very stressful as is waiting for the darn results! ;-) Hang in there, the knowledge of what direction to take to get you to feeling better is near! Keep updating. 

CherylS Apprentice
CherylS
Posted

So glad you are getting a biopsy.  It sounds like it will be worth the wait.

nvsmom Community Regular
nvsmom
Posted

Double check which celiac tests were done.  Because you are IgA deficient (5% of celiacs are) all of your IgA based celiac tests (tTG IgA etc) will probably be negative even if you are a celiac.  The tests you need are the tTG IgG, DGP IgG, EMA IgG and maybe the older AGA IgG.

Good luck!

Gemini Experienced
Gemini
Posted
2 hours ago, nvsmom said:

Double check which celiac tests were done.  Because you are IgA deficient (5% of celiacs are) all of your IgA based celiac tests (tTG IgA etc) will probably be negative even if you are a celiac.  The tests you need are the tTG IgG, DGP IgG, EMA IgG and maybe the older AGA IgG.

Good luck!

I recently read that your Total IgA would have to be close to zero to be considered IgA deficient enough to skew test results but I am not sure I believe that.  The lower the number outside the normal range would make it seem far less likely to get accurate results.  I think this is why it is so important to do gene testing also.  That is so basic these days and there are no gluten challenges needed.

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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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