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I Had Hoped To Never Return To This Place


zus888

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IrishHeart Veteran

So did he do a scraping?

It's only necessary when the doc cannot distinguish it from other rashes.

If both docs say it's shingles, it's probably shingles. :(

We could speculate all day long whether or not resuming the gluten was the catalyst for it, the point is, it's here now.

SUZANNA---With the addition of antivirals--- and I believe you said antibiotics as well??-- into your system--I hope you take some probiotics as well to help out your gut.

Autoimmune diseases run in packs....this thing may have erupted from chronic stress and a compromised system. Reintroducing gluten has not done you any favors, IMHO.

Having to wait a few weeks before procedures is a very good idea. Again, IMHO. Your body is run down apparently and an active virus needs to be treated.

I still do not understand why you are doing this gluten-challenge right now, after being gluten-free for so many months, but like everything else you do in your life, it's your decision.

Rest up & Good luck.


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zus888 Contributor

Nope. He was sure of it based on looking at it and hearing my history. I did explain that I have celiac and have been eating gluten and that perhaps that the rash is DH. But he was adamant and completely confident that it is shingles.

On another note, my thyroid is watched closely - every 6 weeks I am tested. I was hyPERthyroid for a little bit, but none of my symptoms were relieved (constantly cold, forgetful to the point of being unable to remember to take my meds which is unusual for me, fatigued).

pricklypear1971 Community Regular

Nope. He was sure of it based on looking at it and hearing my history. I did explain that I have celiac and have been eating gluten and that perhaps that the rash is DH. But he was adamant and completely confident that it is shingles.

On another note, my thyroid is watched closely - every 6 weeks I am tested. I was hyPERthyroid for a little bit, but none of my symptoms were relieved (constantly cold, forgetful to the point of being unable to remember to take my meds which is unusual for me, fatigued).

If you are satisfied with a dx without a scraping, that's up to you.

I would have forced the scraping since so much hinges on the dx (scheduled surgery )and you want further proof of Celiac if applicable.

Gemini Experienced

If you are satisfied with a dx without a scraping, that's up to you.

I would have forced the scraping since so much hinges on the dx (scheduled surgery )and you want further proof of Celiac if applicable.

You do not need a smear or scraping for the diagnosis of shingles...only if, like IrishHeart said, it's hard to distinguish from other rashes. Shingles only ever appears on one side of the body...not on both sides at once so that's a huge clue. You can also run fevers with it since it is a virus. Other rashes do not usually come with fevers. You cannot have surgery if you have an active rash on your body. It needs to heal. I know it can be annoying to have to wait but you cannot heal well from surgery with a possible virus or something else going on.

domesticactivist Collaborator

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.

YES!!! <3

IrishHeart Veteran

from herpes zoster clinic.

"It is not clear what prompts the virus to reactivate or "awaken" in healthy people. A temporary weakness in immunity (the body's ability to fight infection) may allow the virus to multiply and move along nerve fibers toward the skin. Although children can get shingles, it is more common in people over the age 50. Illness, trauma and stress may also trigger a shingles attack.

People with a weakened immunity for any reason are more prone to develop shingles. They are also more likely to have a serious form of it.

How is Shingles diagnosed?

The diagnosis is based on the way the blisters look and a history of pain before the rash on one side of the body. The dermatologist may scrape skin cells from a blister onto a glass slide for examination. The glass slide is then examined under a microscope for changes characteristic of zoster. If there is any doubt, blister fluid containing virus can be sent to the laboratory for special testing."

Just FYI :)

Marilyn R Community Regular

Interesting. I have been plagued by the herpes virus since I was 16 years old. I've always wondered if it was from sharing lipstick with a friend (still rememeber her name) or my Aunt Crystal (she had it too). For the first time in well over three years I felt like I was getting a herpes sore on my lip. I applied ice twice, then took am anti-anxiety medication. The sore never appeared, and I slept like a log. The silver lining in the sow's ear appears too be that we never get sick from common illnessess. Our defense system is up to British Standards. I think the anti-anxiety medication simmered my system down, don't use it often but was happy with the outcome this time.


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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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