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Confused

KayJay

By KayJay
in Related Issues & Disorders

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KayJay Enthusiast
KayJay
Posted

I am confused about a few things and looking for some answers.

Is Celiac an autoimmune disease? I don't think I actually have celiac just gluten intolerance according to Dr. Fine. I have never had a biopsy but have been gluten-free for 3 years now and doing fine until recently.

I read on here that if you have one autoimmune disease you are at a higher risk of developing more. 4 years ago when I was really sick they did blood test and thought I had Lupus. I know that is a common mistake right?

Well, I have been fine but recently got the flu. I think that triggered something and I have no idea what. I have had zero energy and can't get rid of a low grade fever even with the antibiotics I am on. I went to the doctor and he is testing my thyroid and blood counts but I have little hope of them finding anything. It just took so long to get diagnosed with this I have little faith in Doctors sometimes. (He even had little faith in finding anything) I guess I should mention that I have gained 11 pounds (in the last 7 months!) despite eating right and working out :angry:

Help! I don't know what is going on with me or who to turn to. I have an 18 month old and I feel like I am being a horrible mother to her because I have absolutely no energy to play :(

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wowzer Community Regular
wowzer
Posted

Celiac is an autoimmune disease and so is thyroid. I don't have an official celiac diagnosis. I have been tested for lupus, herpes, all sorts of things. All my tests came out negative. I have had so many extremely itchy rashes and finally when I saw DH a light bulb came on. I went gluten free the beginning of the year and it has helped a lot of my symptoms. I still am missing something, but hopefully I'll figure it out. It sure is frustrating to feel awful. My husband thinks I make these things up. I have a little sister whom was diagnosed with celiac at a year. She has a long list of the autoimmune disorders going. I hope you find your answer soon.

RiceGuy Collaborator
RiceGuy
Posted

When I first went gluten-free, it took about 6 months to really begin to see some changes. Once that started, I knew I was on the right track. However, like many others, over time other things began creeping up. Thanks to the member on this board, I did finally figure out some of the major ones. So now I take a sublingual methylcobalamin (vitamin B12) supplement, and also a magnesium supplement. It wouldn't surprise me if I find it necessary to supplement other nutrients, but I'm hopeful that won't be the case. I also had to cut out all dairy, though I wasn't eating much of it anyway. Getting more proteins from beans and grains also has helped.

One allergy which did surface was to corn. I think I've narrowed it down to GMO varieties, because organic ones and things like popping corn are still generally ok. I get cold-like symptoms from the ones that bother me. Nightshades also seem to bother me the last I tried any, but I don't consider the reaction to be an allergy. Rather, it's more of an inability on the part of my digestive system to filter out the neurotoxin which they contain. It happens to be toxic to everyone, but most people have a high enough tolerance such that the usual amounts consumed don't create enough of an impact to get noticed.

As for your fever, that I know is supposed to indicate some kind of effort by the immune system to kill off whatever microbial gremlin is bugging the body. I do imagine it's quite possible for a fever to be caused by other things, but I've not researched it. Sometimes though, antibiotics can do more harm than good, and I do know from experience how they can really mess with the body in all sorts of ways. So I'd caution about taking such things, or any drug for that matter.

Some other things which have plagued a number of the members here are canola and MSG. Though I haven't seen fever as being related to MSG, it does cause migraines for many. Apparently it can be in vaccines too. Here's a link to some good Open Original Shared Link for anyone who want to look into it.

I wish I had some definitive answers for you, but hopefully between all the replies and your own research, you'll find the solutions you seek.

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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?

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      @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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