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Help it's bad this time

Annieoh

By Annieoh
in Coping with Celiac Disease

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Annieoh Apprentice
Annieoh
Posted

Help! I'm struggling like I've not in YEARS. The flareup is intense and at this moment, figuring the cause (what the heck did I eat? What could it be? Was it this? Was it this???)is secondary to just getting over it. Feeling desperate.

Some background: I figured out my sensitivity to gluten on my own through elimination diets. It came on in my late 40s, I'm now 53. When I'm strict with my diet, I'm good. My symptoms are constipation, fatigue, brain fog, sleeplessness and possibly the worst - chronic sneezing, itchy face and eyes. I suspect the histamine reaction is due to leaky gut. I'm working on that. I don't know if I just got glutened and maybe the leaky gut got so much worse that anything I eat triggers a histamine reaction now? I'm reaching.

For years I didn't know what was happening to me so all those years of abuse my nose took, I developed nasal polyps and rhinitis. Usually if I get glutened, measures such as drinking fresh ginger tea, keifer, eating bland meals with lots of dark greens and keeping hydrated does the trick in a few days. This time is bad and nothing I do is helping. It's been over a week and I can't take it. My face and nose are on fire and I am so foggy and fatigued I can barely work. I just want to go to sleep so I don't have to feel the misery. I need whatever got in me to leave my body.

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knitty kitty Grand Master
knitty kitty
Posted
(edited)

Hi, @Annieoh,

Sorry you're feeling so poorly.

Are you eating a low histamine diet?  No processed foods like sausages and gluten free cookies, no canned foods, no nightshades (tomatoes, potatoes, eggplants and peppers because they promote that leaky gut), no eggs, no alcohol, no fermented foods like sauerkraut, keifir, and yogurt, no dairy, no smoked foods. You may want to revert to the AutoImmune Protocol diet which is basically fresh meat and veggies.  I find this helps immensely.  

How is your Vitamin D level?  I found this interesting article linking Vitamin D deficiency and nasal polyps....

"Vitamin D deficiency is associated with increased human sinonasal fibroblast proliferation in chronic rhinosinusitis with nasal polyps"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4921271/

And to help process the excess histamine out of your body, Vitamin C and Vitamin B6 are helpful, along with magnesium (will help with the constipation, too) and Vitamin B1 (benfotiamine and allithiamine will help with the fatigue).  A good gluten free B-Complex vitamin supplement all the time will help you cover those deficiencies that can occur on a gluten free diet.

Hope you feel better soon!  

Keep us posted on your progress!

 

 

 

 

Edited by knitty kitty
Typo
Annieoh Apprentice
Annieoh
Posted
  • Author

Thank you for posting and sharing that article. Very interesting!  This makes a lot of sense. I’m already taking Vit D as my muscle aches made me suspect I was deficient. but I’ve not been diligent. Another good reason to be more committed. Will def research further. Yes I had doubled down on eating only anti inflammatory foods since the glutening along with other measures that usually helped in the past but this time didn’t. Incidents have become so rare for me that I’ve become sloppy.

*I’ll keep going* in case it’s useful for anyone with similar issues. Thankfully I’m passed the worst of it (at least the GI part) now on to healing the super inflamed nasals. Using a Netti Pot (without the saline) helped with the fiery mucous membranes. But Interestingly, smoking some CBD-only (trace amount of THC) banished the irritation in my nose altogether. My husband picked some Up for me at a local dispensary. It was a last ditch effort. I’m feeling MUCH better now. Cannabis is legal in California and I’m not saying it’s would be the answer for everyone with irritated sinuses or rhinitis flare up but worked for me in this instance. As the recent culprit, At this point I’m suspecting a vegan gluten free marshmallow offered to me by a fellow backpacker during a trip. It was the only thing out of the ordinary that I ate. My bad. I normally NEVER accept food from others unless I can research first and if I eat a marshmallow it’s only Kraft Jet Puff. but the ingredients didn’t list anything suspect and i was feeling safe. These were Dandies. Their gluten statement: “Dandies are manufactured in a gluten free environment on a dedicated gluten free line. While we process gluten in our building, we strictly control the usage and storage of wheat in our facility in accordance with our Allergen Management Program.” Never again.

knitty kitty Grand Master
knitty kitty
Posted

@Annieoh,

I'm very glad you are feeling better.   You're very lucky to live in California.  

I'm curious if airborne wheat in the marshmallow factory was the problem.  

Keep us posted on your progress! 

Best wishes for a speedy recovery! 

 

 

Scott Adams Grand Master
Scott Adams
Posted

Here are some ideas:

 

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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
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      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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