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1desperateladysaved

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1desperateladysaved Proficient

We don't all have the same stories; we don't all have the same reactions, we don't have the same care givers. But here you can find:

people that have simalar health experiences.

You can discover how people have overcome problems simalar to your own.

People here can understand the feelings of your infirmity.

You can receive/give encouragement to those traveling the same road.

One can get alot of information on how to learn to handle symptoms that come up.

You can find information on how to get your gluten free diet to use.

Those who have experienced celiac first hand may well know more than doctors about many aspects of the disease.

You can find people that can tell you about your test results and what they mean. They do so out of their experience of being tested.

I wouldn't do with out my Chiro for help, but you all are the experts of how to make this gluten free plan work.


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Adalaide Mentor

I got sent out into the world by my doctor's clinic (but not my actual doctor) with basically a good luck and use the internet. As I had gotten sicker and sicker I tried to be more and more healthy by adding things like whole wheat to my diet. I was an emotional train wreck when I first posted. Everything I had done to try to get better was all for naught, I was poisoning myself.

For me it was that shoulder to cry on and people to tell me I wasn't crazy to feel everything I felt.

It was guiding hands as I found my way.

It's a sympathetic ear when my MIL drives me to the brink.

It's ideas on how to deal with situations that are new to me.

It's a community of people who truly understand what I go through because all of us go through it. Maybe not in exactly the same way, all of our battles are fought a little differently but it's the same battle we all fight.

I'm sure there is lots more I could add but I'm really dense tonight.

bartfull Rising Star

It's all of the things you have said above, but for me it was also the knowledgable people here who helped me track down my other intolerances. I had never even heard of salicylates, but with the help of my friends here, I learned what they are, where they are found, and sure enough, sals were the missing piece of my own puzzle.

nvsmom Community Regular

I agree with bartfull, those missing pieces getting filled in was amazingly helpful to me. I now have ideas about what foods could cause a gluten-free flare up, ideas of how long recovery takes, and found another AI disease that is linked to celiacs that I'm now being treated for.

Thanks all. :)

YoloGx Rookie

It's all of the things you have said above, but for me it was also the knowledgable people here who helped me track down my other intolerances. I had never even heard of salicylates, but with the help of my friends here, I learned what they are, where they are found, and sure enough, sals were the missing piece of my own puzzle.

Hi Bart, Glad to hear you were helped by some of our comments about sals after all. I too was helped here in that way concerning other food sensitivities. I literally had no idea.

But on top of that, if it weren't for this forum I'd have had no idea that I needed to be as careful of cross contamination from gluten as I do. By being that careful, I now almost never get a bug anymore, whereas in the past I was constantly ill it seemed, for months at a time despite all my best efforts.

I still get migraines from time to time but even they are lessening as I learn to avoid medium to high salicylates, oxalates, amines and tannins as well as completely avoiding the gluten.

I am 63 years old and having a renewed more youthful, no longer painful (for the most part) body and outlook. Its a bit of work, but all so very worth it.

The other piece of the puzzle I am unravelling that is brand new is that cleaning out the liver and gall bladder is key to having less severe reactions to gluten and other possible food sensitivities. It makes sense when you stop and think about it. Thus a healthy diet with no sugar which balances the type of proteins you get as well as fruits and vegetables you can handle is again key.

Plus there are a very a few herbs taken in low dose that are actually considered by some to be antidotes to salicylates and helpful for liver and gall bladder health: barberry, nettles and sometimes dandelion. My thinking is that they should be very beneficial for many who also just have celiac since a lot of folks here have gall bladder difficulties. Certainly it seems to be shortening my reactions, and especially the migraines I tend to get when exposed to any of the above listed "baddies."

srall Contributor

I agree with everybody's posts. I don't post here very much anymore, but I find myself checking in for support every once in awhile especially when I'm feeling bad from slipping on my diet (whether it's gluten or another sensitivity)

In addition, this is the forum where I discovered paleo and primal eating, which is honestly how I feel my absolute best. If I get off that diet I immediately start to feel sluggish and tired.

But really I love just not feeling that I'm crazy and realizing that others were going through the same thing was so comforting. Especially reading about people who got a negative celiac diagnosis but still had crippling health problems that cleared up gluten free.

bartfull Rising Star

Yolo, it was you who told me about sals, and I will be forever grateful! I think it was a couple of weeks ago on another thread where I gave you the credit for helping me. I was hoping you would see it so you would know I haven't forgotten your help. So, thanks again! :)

Another great thing about this forum is the friends I have made. Some of you (you know who you are), have become friends for life.

One more thing comes to mind right now too: After 15 months on the gluten-free diet, I have finally learned enough to be able to help others. In this world full of increasing strife, it sure feels good to be able to "pass it forward". If anything I have said has helped one person, that makes my life more worthy and makes me feel really good. So to all of you who have asked questions here on the forum or in PM's, I say thank you. :)


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mommida Enthusiast

I went symptomatic after I had my daughter. My daughter was having odd symptoms too, and then she started on solid food and it really hit the fan. When she was diagnosed we set up an appointment with the hospital's dietician. The dietician called and cancelled the appointment. She said to buy a book by Danna Korn and come here, she really couldn't help.

Interesting enough, when my daughter was getting worse and diagnosed with Eosinophilic Esophagitus I found help here. I did not know we had individuals here with EoE because gluten is their "trigger". The numbers weren't really high but searches on the internet was revealing posts on gluten free forum (I was viewing my own posts trying to find more information) as the highest viewed internet blurbs on EoE!!?

My theory on the connection has been proven, there is a connection between Celiac and EoE. If a Celiac's immune system chooses to battle gluten with eosinophils, then that individual will be termed and Eosinophil digestive disorder depending on where in the GI tack the eosinophils are discovered. I also believe the eosinophils are highly connected to leaky gut syndrome. (the eosinophil has the spear like ability to puncture through the gut wall)

I have ranted on to long, but if the medical community would monitor the individuals who live Celiac, DH, gluten intolerance, and Eosinophilic Gi disorders ~ conections would be clear. We need to find the root cause, not just follow symptoms.

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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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