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How To Rule Out Other Sensitivities?


monicanina

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monicanina Newbie

i'm sure people have discussed this on the boards before but i didn't know how to search it, i apologize.. anyone who has time to give me a quick tip would be much appreciated.

my question is this: i had a pos. blood test and neg. biopsy and i'm ready to start a gluten free diet just to see how i feel... but suppose i start the diet and still feel sick, how do i know if i'm gluten sensitive AND sensitive to corn/soy/etc? i have gastro problems seemingly all the time... everything seems to make me bloated and gassy -- soy, broccoli, sugar, olives, peanuts, salsa -- and i have lactose prob.s that only developed when all these other symptoms came along, about three years ago. i also had an egg allergy when i was a baby that disappeared (as far as i can tell). do i have to pay $300 for one of those blood tests to know what's causing what? i feel like i can't pinpoint my symptoms to any food in particular (not even wheat) and that's part of why my dr. keeps insisting i have IBS and nothing more. i've kept food diaries up the wazoo. nothing seems to make any sense whatsoever. i spent a year with hives every single day. my nails are weak and peely and gross. i feel tired a lot even though i exercise regularly. i have neither gained nor lost a significant amount of weight. and i have NO idea what i'm doing right now because all I've been told is that there's nothing I can do to help myself... by two gastros and a nutritionalist.

any advice on how to sort out the culprits would be appreciated.

thanks endlessly!

monica


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tarnalberry Community Regular

A food diary won't do much good if you can't narrow things down, so one option is what I'm doing - a strict elimination diet. A strict, forward elimination diet means you cut out just about everything from your diet, aside from a handful of items that you know don't bother you and have low allergenic potential. After a week of eating nothing but that, you add in items, one at a time, for a few days, and see how your body reacts. It takes time, can be hard on your body, and is more emotionally challenging than you can imagine until you try it. And technically, you shouldn't do it without talking to your doctor first. But it is a valid method that doctors use after other tests don't work.

To give some more specifics:

The first week, I'll be ingesting nothing other than quinoa and buckwheat (neither are grains, which I'm not including in this first week (so no rice!)), sweet potatoes and white potatoes, beef and lamb and turkey and chicken, spinach and carrots and beets (but I may need to take these out after a bad case of diahreah last night) and onions, grapes and apples and pears and watermelon (which also may be coming out due to last night's experience), olive oil and avocado and salt, and water. Period. No juices, no milks, no vitamins or pills, no spices, no candy, no nothing else. Literally ONLY those 19 items.

After a week of that, I will have milk (I may go with lactose free milk to specifically test caesin) for two days, and then go back to those 19 foods for the next day. Next, I will be adding soy in (probably soy milk, soy nuts, and soy sauce, I don't use much other soy) for two days, and go back to the original 19 foods for day after that. Then trying corn for two days (corn tortillas, corn flakes, other stricky corn items), and back to the original 19 foods for the day after that. And then another three days for testing peanuts and legumes.

Since those are the foods I'm most concerned about, I'm taking those tests very slow and simply. After that, I'll be testing shellfish, fish, eggs, tree nuts, strawberries, citrus, and tomatoes in two day shifts. (One day with plenty of the food, the next with none.)

All told, this is going to take four weeks. And I'm day three and already don't like it. I don't know if my body was "detoxing" or whatever, but last nights episode sucked, I've been hungry, and wanting foods (like citrus) that I can't have, and know that it's going to be a while before I can eat the things I want. But I've had a skin allergy test before, and it didn't show much of any response. (I could be dealing with an intolerance, not an allergy here.)

At the end of this, I may finally test out oats as well, we'll see how my patience is holding up.

GEF Explorer

Wow, Tiffany.. that is amazing!! Good luck through your trial and error!! I'll be thinking about you.

Gretchen

celiac3270 Collaborator

Interesting idea...........I've thought of reducing my diet to nothing and building slowly to look for problems..........that's a good idea for you to do that...........I'm going to give it a few more months, though, and if I still feel bad and the doctor doesn't know what to do, I might try that. Good luck and good idea :) .

-celiac3270

burdee Enthusiast

Good Luck, Tiffany. :D Eliminating whatever bothered me by loosely following the chart of possible allergens, after my gluten/casein intolerance diagnosis and horrible experience with trying to substitute soy for dairy, has certainly helped me experience more and more painfree (symptom free) days. Whatever our 'diagnoses', we still have to individually assess which foods bother us, because we all have varying amounts of celiac damage to our systems as well as different kinds of symptoms. I applaud your logical approach to eliminating whatever foods give you reactions. ;)

BURDEE

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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. 
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      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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