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Possible Gluten Allergy


JAMIELYNN

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JAMIELYNN Newbie

I too am one of the many people on here wondering if my symptoms are possible gluten allergies. I had my blood drawn at a GI doctor and am still waiting for results (almost 4 weeks by the time of my appt). My symptoms include; severe bloating and cramping (to the point where I had a hysterectomy last year at the age of 29), gas, lightheadedness, eczema, irritability, PCOS (I had one child with the help of fertility medication and 8 other tries got me nowhere), depression, acid reflux and insomnia. I unlike what I have read about Celiac's am not underweight nor have I lost weight. In fact it is quite the opposite and I seem to keep gaining (probably because of poor diet). My symptoms have increasingly become worse in the last year, but have been going on for a lot longer than that. I travel 90% of the time with my job and am forced to eat out most of the time. I am an auditor and have odd work hours. I live on junk food and have to eat pizza with the staff during my inventories. When my blood tests come back if it is Celiac's are there any suggestions on how to eat better when traveling so much? If it is not does anyone have any ideas on what it could be? I do not know what blood test they ran on me.

  • 2 weeks later...

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Booghead Contributor

It could still be Celiacs with the blood test negative. As for eating out: get Baked Potatoes from Wendys or salads from subway or blimpie, Chilis hasn't made me sick and some Mexican restraunts are very helpful as well. Infertility is a very big symptom of Celiacs, I'm 17 so I haven't had this problem yet ;) Glad you could have one child at least. Eczema could actually be Dermatitis Herpformis which is associated with Celiacs. Irritabily can be a symptom or an outcome of feeling trashy, its hard to be nice when you feel like poop. Pizza is a no no. Though there are some pizza places that make gluten free crust you just have to be careful about Cross Contamination. Grab some Rice cakes or fruit. Lately i've been eating Apples and Bananas like a maniac. lol Don't just rule out celiacs if the blood test is negative. Give gluten free a try. Its not so bad. B)

gfpirate Rookie

You very well could have an allergy/celiac. The blood tests aren't always accurate, and you could get a false negative. The best thing for you to do is to try the gluten free diet for a month or so, and see if your conditions have improved.

As for food and travel, I would suggest bringing your own food. Fresh fruits and vegetables are always safe, nuts (as long as they aren't proccessed on shared equipment), popcorn is usually gluten-free. Udi's makes gluten-free sandwich bread that is not half bad. You could also try a breadless wrap, I usually take salami and wrap it up with pepper jack cheese, with mayo and sometimes lettuce. You might be surprised at what your local grocer may have... I usually shop at Food Lion and was completely unaware that they had an entire gluten free aisle. Not sure if all locations do, but definitely worth a try.

Celiac doesn't mean you have to stop eating out. Chili's, Wendy's, Chick-Fil-A, and even Taco Bell provide gluten-free options... I've eaten at all three several times and haven't had any issues. You can also always Google the restaurant, as they usually have allergen info online.

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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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