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Celiac's: Get Tested For Lyme!...


tailz

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tailz Apprentice

You all have to read this. Anyone who has been diagnosed with "Celiac's" needs to be aware. I'm getting tested. This is too scary...

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Nancym Enthusiast

Good luck with the testing. I've heard that Lyme disease can be hard to find in the blood after awhile.

Lymetoo Contributor

With the tests almost ALL drs use, it's unlikely Lyme will be found. Some of those tests are terribly inaccurate.

Johns Hopkins.... testing for Lyme inadequate

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If you decide to get tested, your best choice in labs is Igenex Labs in CA. You may have to pull strings to get tested through them. The dr is the biggest obstacle. Most will refuse to use this lab.

here is more info:

More info:

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Wild Condor's Links and information:

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Chrisser Explorer

That article will scare anyone. The biggest thing missing from Lyme Disease that is found with Celiac is the digestive and intestinal issue. I had Lyme Disease when I was younger, and I went 9 months undiagnosed. I didn't get the rash when I got bitten, but I was able to link it back to flicking a little bug off my hip when I was changing out of my bathing suit after the beach one day. I was fortunate enough to have had a mild case, as the only symptoms I had were horrible fatigue and muscle aches. A friend of mine, however, had to have IV antibiotics because she had a more severe case. I wouldn't mistake Celiac for Lyme Disease, but if it would make you feel more comfortable getting tested then talk to your doctor about it.

Here's another link for you:

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EDIT:

OK, I could definitely be wrong about this...I didn't do enough reading before I posted.

Still sounds fishy to me, though.

rinne Apprentice

Lyme Disease can affect the digestive system.

Thanks for posting the article. It is long and wordy but for anyone who is feeling lost and overwhelmed with the number of symptoms they have it is well worth the read.

It is funny how we come to learn things, perhaps five years ago my sister was diagnosed with IBS and Celiac and I remember noting that Celiac was that wheat thing and that I probably had it but since I already avoided bread I really didn't need to look too closely at it. After all, I knew that if I ate bread I didn't digest it and the rare times I did I simply increased my ground flax seed and moved it through. Now I understand how much damage I was doing to myself by doing that. :(

A friend was telling me recently that when she first became seriously ill she thought she had Chronic Fatigue Syndrome and was participating in an on-line support group for CFS but occasionally she would visit the Lyme Board and there was a woman there who repeatedly told her she thought she had Lyme. My friend would say no and go away for awhile but she kept going back and eventually she did get tested and she did have Lyme. We hadn't spoken in twenty years when she got a hold of me this past winter and we've been talking about being ill, her Lyme and my Celiac/Gluten Intolerance and Arthritis and it never occured to either of us that I might have Lyme. I believe I am exhibiting that kind of circumstantial recounting that Lyme patients do, <_< Anyways we were discussing salt, iodine, the thyroid and the adrenal system and she offered to forward me an article on Salt but accidentally forwarded me the Salt/Vitamin C protocol for treating Lyme and I read it and I saw myself. I also realize that if I had read the article three years ago it wouldn't have occured to me that I had Lyme because it has only been in the past two years that I have had the later stage symptoms appear.

As I have said elsewhere I started using the salt/c as a diagnostic tool and have now had two herxes. I'm pretty much convinced I have Lyme and that it manifested in the area of my body that was weakest first. I have improved on a gluten and dairy free diet and won't return to it although maybe I am hoping for a little cheese. :)

As I read many people's stories here I see the possiblity for Lyme disease in their symptoms but I think it is one of the last places people go because there is so little information about it and how varying the symptoms can be. I also think that once our focus becomes food issues we can lose ourselves in the effort to modify our diets in hopes that by doing so we will get better.

Oh, and as a bonus the salt/c has given me back sleep, I am now sleeping close to seven hours a night which I haven't done in so many years I can't even remember. I have mostly slept for four or five hours and woken tired, I am actually feeling refreshed when I wake up.

Hope I didn't hijack this thread too badly. I really appreciate the effort you are making to bring this information forward. :)

Lymetoo Contributor
Here's another link for you:

Open Original Shared Link

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EDIT:

OK, I could definitely be wrong about this...I didn't do enough reading before I posted.

Still sounds fishy to me, though.

What sounds fishy??? :unsure:

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    • marion wheaton
      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
      @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
      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
      @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!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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