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Charlene Shelmire

Supersenstitive Celiac— May Have To Resort To Eating Cardboard

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I've become very sick after eating a homemade soup which contained organic carrots, organic broccoli, organic white potatoes, Harvestland organic chicken and no dry seasonings (bland). My usual symptoms kicked in immediately such as severe stomach pain, hot flashes, chills, diarrhea, nausea, brain fog, muscle, and joint pain, etc., I was diagnosed with celiac disease earlier this year and I've spent lots of money on food, but to no avail. The elimination diet causes a complexity of issues for me—money wasted, further damage my gut and delayed healing. Even healthy foods pose a problem for me and my "tolerable" list of foods are minimal. My symptoms are either a delayed response or immediate, depending on the food. I often ask, "How can a healthy food cause this much discomfort?" I have good days and bad days and symptoms waxes and wanes. I joked with someone that I'm to the point of resorting to eating cardboard. Anyone have advice for me, I'd truly appreciate it.

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16 minutes ago, Charlene Shelmire said:

I've become very sick after eating a homemade soup which contained organic carrots, organic broccoli, organic white potatoes, Harvestland organic chicken and no dry seasonings (bland). My usual symptoms kicked in immediately such as severe stomach pain, hot flashes, chills, diarrhea, nausea, brain fog, muscle, and joint pain, etc., I was diagnosed with celiac disease earlier this year and I've spent lots of money on food, but to no avail. The elimination diet causes a complexity of issues for me—money wasted, further damage my gut and delayed healing. Even healthy foods pose a problem for me and my "tolerable" list of foods are minimal. My symptoms are either a delayed response or immediate, depending on the food. I often ask, "How can a healthy food cause this much discomfort?" I have good days and bad days and symptoms waxes and wanes. I joked with someone that I'm to the point of resorting to eating cardboard. Anyone have advice for me, I'd truly appreciate it.

When were you diagnosed?  If it has been more than six months, ask your doctor to run another antibodies panel:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

There is a steep learning curve to the gluten-free diet.  It sounds like you have it down though.  I would not worry about non-responsive celiac disease, but you can learn more here: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Your symptoms may be due to another illness.  Sadly, you can develop other autoimmune disorders.  

Rule out celiac disease as  the root cause first.  It is the easiest place to start.  

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I was diagnosed in April of this year by a PCP who stated my blood work was in range. When I asked for more details, I was brushed off and told you just need antidepressants to relax your gut. But I knew better and began to do extensive research on autoimmune diseases. Back in 1994, I was informed by a doctor that he saw a problem with my antibodies and I've always had hypothyroidism, gastritis and lots of food allergies. I thought going organic was my solution; however, I agree with you that there could be a different issue going on here. I appreciate the great advice and the links.

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If you live in the US you have a right to get your test results sent to you. You should check to see if you had the full celiac panel done. It's possible the blood test your positive on  is one that they did not do.

You can always buy a Nima sensor and test all of your food before you eat it. If you're not keeping food logs you should start because you could be affected a few days after you eat something.

My blood test numbers only improve on a liquid diet but I'm in my 50s.

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Could be that you have an issue with FODMAPs. Broccoli contains FODMAPs, and so if you eat a lot of them it can result in similar GI symptoms to celiac. It might be a forever thing, or it might be just because your GI tract is still healing, and having trouble with things that are more difficult to digest (ie. FODMAPs).

I get some GI issues if I eat too many polyols (a type of FODMAP), which are found in sugar replacements and in some fruits/veggies (sweet potatoes, butternut squash, stone fruits). I can still eat these foods, I just have to make sure that I keep the serving small, and eat other foods with them. Unlike many, I am able to distinguish fairly easily between gluten-related problems and GI problems for other reasons because I experience significant extra-intestinal issues. When I ingest large amounts of polyol-containing foods, I do not experience anything other than relatively short-lived, painless GI issues (gas, diarrhea).

In addition to the advice above, it might be good to see a registered dietitian - they can help you figure out if FODMAPs are the problem, and if so, how to make a balanced diet that is both low FODMAP and gluten-free. You don't want to go around eliminating foods randomly, because the more restrictive you make your diet, the higher the chances that you end up with malnutrition issues (not to mention the psychosocial stress of it all).

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I was diagnosed in 2007 and went gluten free immediately however even a year later I was having problems like you describe. I went on an illmination diet. I got to 10 foods only diet before my symptoms stopped. That diet was organic brown rice, organic sweet potato for carbs. Organic green beans and peas for veggie. Organic rasins, apples and peaches. Organic eggs  and wild fish. That is all I ate for 4 years. I began adding one food at a time to see if i had reaction. 11 years later and I know FODMAP bad foods cause lots of gas so I do this diet. Nightshades still give me nerve pain in my muscles as well as corn. I have been able to add the colorful harvest carrots and snap peas. Also apple bananas, pears, plums and dates. Also Almonds and almond oil as well as sesame seed oil. I have recently added non hormone/antibiotic free pork and duck. My pill camera and colonoscopy show healed gi but blood tests related to leaky gut show slight issues. I hope this helps you find a diet that stops your symptoms. I found a full vitamin panel helped me pin point my vitamin supplements as well since multivitamins and any type of magnesium synthetic or food based makes me cramp for 48 hrs to date. In summary I worried I had refractory sprue but turns out food intollerences are a bigger challenge than gluten free for me. Well wishes.

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WE are all a bit different, I ended up with multiple food allergies, intolerance, and food sensitives, pancreas issues, and another auto immune disease that flares to sugars and spices...I had to go basically Keto/paleo no grains, potatoes, beans, or squash and limit veggie intake, then due to pancreas no meats either except in moderation with pig pancreas enzyme pills to break them down.
NEVER underestimate what might disaggree with the body, I got allergies to anything with the corn (citric acids sometimes and xantham gum made from it) and got bloody sensitivities to iceberg lettuce even.

Keep a food dairy, try each ingredient by ITSELF, build a list.

After a gluten exposure i can not handle solids for weeks, and have to eat mushy egg dishes, blended meals, and nut meal/butter porridge.

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I can't tolerate peanut butter(even natural), cashews, walnuts or any of the nuts. The list is super long and sometimes I go all day without eating any food because that's the only way I thought I could avoid the horrible symptoms. As a result, my blood sugar drops very low, so I'll grab a food ( peanut butter or a cookie)  to raise my blood sugar quickly. The next morning, I can't even get out of bed and have paralyzing joint and muscle pain, brain fog, severe low back pain, memory problems, fatigue, nausea, diarrhea, and migraines. I can't tolerate anything with sugar (even natural sugar in fruit) or else I'll sleep over 9 hours and wake up and feel like I never slept. I can only tolerate a certain brand of bottled water (Artesian Purified). If I run out of Artesian water, I just drink any brand and then I'm sick again. I'm even sensitive to my mouthwash (probably the sorbitol),  cough syrups,  vitamins, probiotics, and all dry seasonings.  My calorie intake on some days is 500-800.....in an effort to avoid the feel-like-I'm-dying symptoms. My husband is concerned that the dehydration and malnourishment could cause severe problems for me. I'm trying to find a new doctor (this time an internist or gastro specialist). I appreciate all of the above advice from all commenters.

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I expect a fructose/glucose intolerance/sensitivity BUT THEN you mention the water I think might have something to do with your calcium/magnesium or other channels as many waters have trace minerals..this could point to EVERYTHING ELSE, is distilled water fine as in no minerals? I am no specialist but I have met someone at a disability seminar who ended up with issues with her body not processing calcium, and heard of other issues of genes causing traits like these and channel issues from someone who specialized in MTFR. NOTE these are just things I skimmed looking for answers years ago.
 

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1 hour ago, Charlene Shelmire said:

 

I can't tolerate peanut butter(even natural), cashews, walnuts or any of the nuts. The list is super long and sometimes I go all day without eating any food because that's the only way I thought I could avoid the horrible symptoms. As a result, my blood sugar drops very low, so I'll grab a food ( peanut butter or a cookie)  to raise my blood sugar quickly. The next morning, I can't even get out of bed and have paralyzing joint and muscle pain, brain fog, severe low back pain, memory problems, fatigue, nausea, diarrhea, and migraines. I can't tolerate anything with sugar (even natural sugar in fruit) or else I'll sleep over 9 hours and wake up and feel like I never slept. I can only tolerate a certain brand of bottled water (Artesian Purified). If I run out of Artesian water, I just drink any brand and then I'm sick again. I'm even sensitive to my mouthwash (probably the sorbitol),  cough syrups,  vitamins, probiotics, and all dry seasonings.  My calorie intake on some days is 500-800.....in an effort to avoid the feel-like-I'm-dying symptoms. My husband is concerned that the dehydration and malnourishment could cause severe problems for me. I'm trying to find a new doctor (this time an internist or gastro specialist). I appreciate all of the above advice from all commenters.

I found water to be a problem early on as well. Tap water chemicals gives me gi distress and additives like magnesium to bottled waters does it too. I drank distilled water for years until I read about acidic ph and water. I saw a youtube where waters were tested and alkaline were better for the body. I bought some ph strips and tested a few non additive brands in my area. Found one and feel much better drinking it. I have also bought a gravity Propur water filter to clean the chemicals out of my tap water. 

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On 9/27/2018 at 11:28 AM, cyclinglady said:

I've become very sick after eating a homemade soup which contained organic carrots, organic broccoli, organic white potatoes, Harvestland organic chicken and no dry seasonings (bland)

You may have other sensitivities. Some of the ones I have/had are Nightshade family. Potatoes make me very ill. (potatoes, tomatoes-I can eat some small amounts of these now, especially yellow ones, eggplants, peppers are some of the nightshades). 

Oxalates: http://www.lowoxalate.info/recipes.html This shows a list of some of the foods and very high (vh) levels to low/very low level (l/vl). Steaming vegetables makes the levels much higher, boiling can lower them. If you eat very high amounts over several days it can build up in your system and then give a very bad reaction. (This is of course IF you are sensitive to them. It's a lack of being able to break them down and eliminate them efficiently.) Carrots for example are quite high. Steamed carrots are super high. 

Potatoes also contain solanine, especially if they are at all green. If you test potatoes again be careful to choose really large ripe ones and none with green color, unripe, or eyes.  (https://en.wikipedia.org/wiki/Solanine I can kind of eat SMALL amounts of potato starch in some baked goods, but very small and infrequently. I am still too scared to try a regular potato. The last 2 times I did I was very ill (headache, vomitting, swelling, etc). Of course you may be fine with ripe ones but a lot of people do seem to have issues with nightshades and potatoes. 

Salycilates: Some people are sensitive to salycilates found in vegetables and most/all? fruits. Most fruits have pretty high levels apart from certain pears and apples (I think golden delicious apples are okay). This site in Australia started an elimination diet for children and then it developed into the "Failsafe Diet" which is basically lowering foods with salycilates and food additives and amines. I'm not promoting it but they have a lot of info about foods that are high in salicylates and amines. 

https://fedup.com.au/information/information/short-failsafe-shopping-list or you can just google foods with salicylates and see if it seems to correlate with the foods you have issues with. Broccoli is high in salicylates. https://www.sjhc.london.on.ca/sites/default/files/salicylate_free_diet_food_guide.pdf

I'm just putting this here for your information and it may not be any of these issues. I was reduced to a handful of foods and now I'm able to add more in but still have reactions to many foods and need to be careful. I avoid really high oxalate and salicylate foods and many nightshades. I eat mushrooms in moderation for the nutrients (they can be grown in a material that contains gluten however but I've tested the ones I eat with a Nima tester and none was detected), small amounts of asparagus which really seems to help me, Lundberg brown basmati rice every few days, acorn squash (it seems milder than butternut which I can't eat so far), organic girl products like rebel greens (baby bok choy), daikon radish, and some shallots though these are new - couldn't touch an onion or anything like that for awhile. Yellow tomatoes are milder but I still have to be careful. I peel everything. I mostly boil, blanch or lightly stir fry but then add water. I have to avoid salt for some reason except in micro amounts but I eat a lot of vegetables so those have sodium anyway. I'm experimenting cautiously with shrimp. I wish I had access to fresh fish but I'm in the mid-west USA. I also add fresh ginger to some foods or just make tea from simmering it lightly and it seems to help me plus add some flavor. I can't do turmeric unfortunately, I've tried several times. 

  When you are feeling better perhaps try adding just one of those items from the soup you made and see how you feel over the next day or two. Bok choy and napa cabbage for some reason I was able to eat a bit more of and they helped give me much needed vegetable options. Also small amounts of daikon radish and as I said acorn squash. Later some mild white mushrooms. I know this is just me but what the heck, I'm just throwing it out there just in case. 

  It sucks when you're feeling awful and I also developed a lot of comfort things for when I'm having a reaction, like for me a heating pad, hot water bottle, "safe" water that works for me - lots of it on hand, and some other things like that. 

  

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On 9/27/2018 at 2:07 PM, pikakegirl said:

I was diagnosed in 2007 and went gluten free immediately however even a year later I was having problems like you describe. I went on an illmination diet. I got to 10 foods only diet before my symptoms stopped. That diet was organic brown rice, organic sweet potato for carbs. Organic green beans and peas for veggie. Organic rasins, apples and peaches. Organic eggs  and wild fish. That is all I ate for 4 years. I began adding one food at a time to see if i had reaction. 11 years later and I know FODMAP bad foods cause lots of gas so I do this diet. Nightshades still give me nerve pain in my muscles as well as corn. I have been able to add the colorful harvest carrots and snap peas. Also apple bananas, pears, plums and dates. Also Almonds and almond oil as well as sesame seed oil. I have recently added non hormone/antibiotic free pork and duck. My pill camera and colonoscopy show healed gi but blood tests related to leaky gut show slight issues. I hope this helps you find a diet that stops your symptoms. I found a full vitamin panel helped me pin point my vitamin supplements as well since multivitamins and any type of magnesium synthetic or food based makes me cramp for 48 hrs to date. In summary I worried I had refractory sprue but turns out food intollerences are a bigger challenge than gluten free for me. Well wishes.

This seems like you might have issues other than celiac disease.

I think my advice would be to see a registered dietitian. Patterns noticed from elimination diets are notoriously difficult to interpret because foods are chemically complex, and eliminating one food often inherently changes the way we eat other foods. Sometimes the things we think are making us sick are in fact, not. A registered dietitian would likely be able to direct you more methodically towards what might be causing your continued issues. Long before I was gluten-free, I thought that tomatoes might be the cause of my issues - eliminating them did seem to work a bit... but you know what? It was because I typically ate tomatoes with wheat-heavy meals (pasta, sandwiches, pizza, burgers etc.). Once I was gluten-free, I realized I had no issue with tomatoes at all.

I will add that I think you might be missing the boat a bit with concentrating on organic foods. They are not safer nor more nutritious. It's just an agricultural standard, and it doesn't mean pesticide-free - in fact, because organic pesticides are often not as rigorously tested, some of them may be more risky than conventional pesticides. I think there is a lot of fear-based (and evidence-free) marketing towards people with chronic diseases that seeks to take advantage of our disillusionment and feelings of not being taken seriously by the establishment, so to speak.

 

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On 9/27/2018 at 9:07 AM, Charlene Shelmire said:

I've become very sick after eating a homemade soup which contained organic carrots, organic broccoli, organic white potatoes, Harvestland organic chicken and no dry seasonings (bland). My usual symptoms kicked in immediately such as severe stomach pain, hot flashes, chills, diarrhea, nausea, brain fog, muscle, and joint pain, etc.

Did you check the label on the chicken? Most chicken has been injected with a filler that contains water and "natural flavor" or something along that lines. If it is not gluten free the package will say that it contains wheat. It may however contain ingredients derived from corn or something like that. 

It sounds like your symptoms are dramatic sudden and caused by something you ate. I don't know how to narrow it down other than by an elimination diet. Have you been tested for food allergies? I know IGE food allergies can cause those sorts of symptoms. 

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I went through something similar last year and am still recovering.   I recently read that it takes 18 to 24 months for a celiac gut to regenerate, vs. a few days to a few weeks for a normal gut.  I'll have to find the link and post it.  This might explain how long it can take.

I found that homemade soup was horrible.   I could not digest the collagen.   My problem started with dietary indiscretions that increased acid production (peanut butter, chocolate, soft drinks).   Trying things that "should" work only made me sicker, for example probiotics.   I kept good lists of what I could and couldn't eat.  I eliminated dairy with some improvement;  then corn. I ended up eating only tuna, rice, cream of rice cereal, green beans, carrots.   My GI doc looked over my lists and figured out that I was sensitive to FODMAPS.   So I ended up on a low FODMAP diet, adjusted to reduce stomach acid. 

It was a very very long, slow process.  At the 16 month point, I am finally on a varied diet, and continue to try to introduce new foods.  

My suggestion is to go talk to your GI Dr.   I wish I hadn't put it off, thinking I was handling it, and instead inadvertently eating the wrong things. 

If you want to look at the low FODMAP diet, try Kate Scarlata's website.   You can also search for High and Low FODMAP lists.    Udi's white sandwich bread meets the low FODMAP criteria and has no dairy or corn.   Karen Frazier has a couple excellent cookbooks for Low FODMAP cooking, and she provides info on how to adjust recipes to meet other GI issues, like stomach acid reduction. 

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You mention you have a very short list of tolerable foods.   What are they?   This may be the key.

Your best bet is to stick to those foods.   I know firsthand that eating virtually the same foods for breakfast, lunch, and dinner is maddening, but it does work. 

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I am so glad someone else mentioned oxalates. You sound like you have many of the same symptoms I had before I went on the low oxalate diet. I highly recommend going to that site and checking it out. It has changed my life, but always a work in progress. I am gluten free and low oxalate -- and unfortunately, dairy free, so life is pretty limited, but I feel so much better! I thought I was eating so healthy, but looking into the oxalate diet, the oxalates were toxic to my system!

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