Hi Fellow Paleo-ers! Listen, have you been paleo for a while (ive been for 2 months) and if you try to consume a grain, even the tiniest little piece, you get a reaction similar to anaphylatic shock but without your throat closing? I have always had a problem with grains. Now, that i have gone paleo it has really come to light. I have been tested for celiac and inflamatory bowel disease and all were negative (I had genetic testing/EGD/colon). However, on my EGD i had increased IELs and blunting of villous tips and mild crypt hyperplasia. THis was from before going paleo. By going paleo all my symptoms have disappeared, but as soon as if i even try to eat a grain or take a little sip of beer i get severe reaction, my blood pressure drops to around 80/50, i get nauseas, can't see good, headache, joint pain, major flushing, skin feels hot but i never have gotten hives or rash, and my extremities feel all heavy and tingly and my chest feels like an elephant is sitting on top of it and i get labored breathing, like sometimes i feel like i have to force myself to breath. I am thinking i have some type of allergy or intolerance to something (possibly yeast, hops, barley, barley malt, or mold, or some type of nut??? or something else). I have been tested for shellfish, wheat, peanuts, and i am not allergic to that. So, my question is, has anyone that has been paleo once you try to eat something non-paleo do you get a severe reaction and please describe it in detail. THANKS!!!
asked byjustouttacuriosity (15)
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on November 24, 2012
at 12:37 PM
thanks for the reply, same exact thing happens to me. BTW, ive been tested for celiac as well as that was negative. Last night i wanted to try a little experiment. I ate one cookie. And before i swallowed it the skin on the roof of mouth peeled off, like it feels like a chemical burn. Before, my whole life, whenever i would eat a soft pretzel this would happen, along with painful bumps that woould break out where my tonsils used to be. Same thing if i ate cupcakes with icing. Happens every single time. I don't have these problems being paleo. So whenever i try to do an experiment by eating something non-paleo i get all these strange reactions. Anybody else with these problems, where the skin on the roof of your mouth will peel off from a processed food item (and it's never a hot item, so it has nothing to do with scalding). When the skin peels off it is white. Then leaves a red burn. Always on the roof of my mouth.
on November 24, 2012
at 05:46 AM
When I used to give in to my junk cravings, I felt:
tossing and turning in bed, restless sleep
inability to function normally
tingling feeling in hands and feet
etc. etc. etc.
I no longer eat junk food so it's all gone.
on November 28, 2012
at 04:18 PM
justouttacuriosity, You make some broad, potentially inaccurate statements in your update here that I would like to address just in case others read this and apply it to their own circumstances:
"I had bloodwork done to rule out celiac." — The bloodwork returns a very high rate of false negatives and it is not in isolation a confirmation of either having celiac or not having celiac (unless you have a bunch of relatives officially diagnosed and then some gastroents will just accept positive bloodwork). The biopsy is still considered the gold-standard confirmation when either the bloodwork is positive, or bloodwork is negative and the patient is symptomatic. There can be biopsy false positives and if the glutenfree diet does not eliminate symptoms (and I personally would recomend a grain-free diet to speed healing), effort should be made to find out if the bowel inflammation and damage is from something else.
"They look for the mutation in the Cd4 and Cd8 strain. Negative, i do not have that. THat means that i have never had celiac, never can get celiac, and do not carry the genetic mutation so I will never be able to pass it down to my children." — Not "having the genes" for celiac is only a risk assessment not entirely conclusive. If you do not have the genes that they currently look for, it only means you are very unlikely to have celiac, not that it is impossible but only improbable. Something like less than 1% of celiacs in the US don't have the genes but they have celiac disease nonetheless and are more likely to be male (see citation below). An interesting study out of Chile found around 7% of celiac children not having the usual alleles but they were specifically an Amerindian population - http://www.ncbi.nlm.nih.gov/pubmed/21505366 . Unfortunately, most labs are not yet testing for DQ9 which only recently has been confirmed as a risk factor - http://www.ncbi.nlm.nih.gov/pubmed/22342873 - and DQ1 is a risk factor for neurological manifestations of gluten intolerance. Additionally, the genes for celiac do not include genes for non-celiac gluten sensitivity which is a confirmed clinical entity now though there is no definitive or even nearly definitive testing for it. If the symptomatic patient is male and negative for the currently tested "celiac" genes, he is more likely than a female patient to have celiac in the absence of the genes - http://www.ncbi.nlm.nih.gov/pubmed/18177450 . Since genes for celiac have been added even as of 2012 that were not before considered "celiac genes", I do not believe we can say that we know everything about celiac yet and therefore cannot necessarily say testing for celiac genes is 100% accurate, only helpful or somewhat predictive.
"gluten-free products are usually organic" No. There are some cross-over products, we might say, but the common GF replacement foods - breads, pastas, etc - are conventionally grown. At best, I would say it's 50-50 but that's just a guess.
"i wonder if it's possible that i have an unknown allergy or intolerance to something weird, like yeast, hops, barley, barley malt, sulfite, or mold, or some additive or preservative?" This statement makes me wish to point out that intolerance to gluten means intolerance to proteins in not only wheat but barley and rye inclusively and for some celiacs, avenin, the protein in oats though many celiacs can eat glutenfree oats fine. (So when the OP says, "I don't have celiac even though my biopsy indicates it but I still react to beer" I say, look at that biopsy again coupled with a reaction to beer - it likely means celiac.)
justouttacuriosity, check out sulfite sensitivity: http://en.wikipedia.org/wiki/Sulfite#Health_risks . My reaction to sulfites in drinks is fast - I flush and my nose gets congested within minutes. In foods, like in canned coconut milk, it's a bit less so and Benadryl does help. I'm also sensitive to Pepcid, how weird is that? and to chamomile and echinacea which has to do with their relationship to ragweed or something.... I forget. There are a lot of potential allergies/sensitivities for some of us who have had damaged guts for a while...
on November 28, 2012
at 10:50 AM
Hi! Thanks for the comments everyone!!! Well, what happened was is I had the EGD and duodenal biopsy, my pathology showed the above, which can be indicative of celiac, helicobacter pylori infection, other infection, NSAID overuse, inflammatory bowel disease, or autoimmune disorder. Bx negative for h pylori so not that, negative any other fungus or bacterium overgrowth so no that. Got a colon, everything appeared normal, had bxs to rule out colitis and they were negative so not that (unless the problem exists in the 3rd part of duodenum, jejunum, or beginning part of ileum, because those parts are never reached by the EGD or colonoscopy scope, unless you got a push enteroscopy, which generally never happens, because it is risky procedure, takes like 4 hours of being under anesthesia, and usually is only used after a patient gets a wireless cap endoscopy, active arterivenous malformation is found, and they decide they want to go in and cauterize, so anyways... back to me... I don't take advil or NSAIDS, not more than like 3 advils per month if that even so it's not from NSAID use. I had bloodwork done to rule out celiac. Shipped my blood to PROMETHEUS labs in california, the only lab i am aware of in the US that performs genetic testing for celiac. They look for the mutation in the Cd4 and Cd8 strain. Negative, i do not have that. THat means that i have never had celiac, never can get celiac, and do not carry the genetic mutation so I will never be able to pass it down to my children. You are correct about the tissue transglutaminase and all those Ig tests, they are not accurate, and really, you can have positive IgA, a biospy of your duodenum that leans towards celiac and blunting of villous tips, so you most likely will get told you have celiac, however, that is inaccurate. Unless you get the genetic DNA testing like i did, then you will never know. I have seen cases where patients have elevated Ig levels, blunting of villi, increased IELs, crypt hyperplasia, they get the genetic testing and turns out no, they do not have celiac, so they are not intolerant to gluten, so something else is causing their problem. Very interesting. So back to me again, anyways, when i had that EGD, that was before going paleo. BTW, also had moderate gastritis, granular duodenum so i started taking nexium. I do no like taking any meds, but i thought, ok, doc is advising it, so just this once i will listen. Big mistake! Got severe diarrhea, going to the bathroom up to 15 times a day straight water. I felt drained. ( BTW multiple stool cultures too and negative). During this time period, i went gluten-free, just to see what would happen. Felt slightly better but not all the way better. I drank gluten-free beer made of sorghum flour if i wanted a beer. I made my own breads of chick pea flour, tapioca, potato starch, stuff like that. I made gluten-free sweets if i wanted a treat. Felt better, but the diarrhea increased. I came to the conclusion that nexium was killing my stomach acid too much and was causing me to get small bowel bacterial overgrowth so I stopped taking it and the diarrhea stopped within 5 days. That was my theory, i ask the dr, and he said yes that is possible. I don't see why doctors never suggest this stuff, i have to bring it up and then they agree with me. If i wasn't so smart i would never know any of this stuff and be like all those people that suffer on the regular basis cause they just dont know. Anyways, back to my story. So, i did feel better gluten-free, which i did for about 3 months, but not completely better. THis happens to a lot of people because gluten-free products are usually organic and have less or no preservatives or additives or high fructose corn syryp, unlike "regular" products. So, i didn't get all the way better until i went completely grain free and went Paleo. I go paleo, my headaches go away. I look awesome and lose weight without even exercising, and it's healthy, where u see muscle and not just lose weight and are left with no muscle and flabby skin. Paleo makes your waiste thinner. Joint pains mysteriously stop. Bad breath goes away. Thinking is clear and you get a ton of energy. You will sleep better. I never get sick, and ive shared drinks/foods with my children when they had colds and i never got it. I work in healthcare and have had sick patients directly cough and sneeze on me and i don't get sick. Before paleo, i was always sick. Had bronchitis at least once a year, with a slew of common colds all the time. Also, with paleo, i feel like i can breathe better, it's really weird to describe. Those dizzy spells i get from time to time are non-existant. THe slurred speech i get sometimes after eating grains has stopped, it's very strange, i told the doctor, some foods i eat i feel like my mouth doesn't work right, like i know what to say but the muscles in my mouth won't let me form words properly. the doc said he never heard that before. So my theory is that grains and cystokines and MAST cells and histamine i think effects the hypothalamus in my brain and that's why i get all these weird reactions, sending out misinformation. Well, i don't get any of these problems being grain-free. The down-side, i have only tried 2 times to drink a coors light (which has grain) and both times, about a month apart from each other... within taking just a few sips, right away i get this weird hot feeling in my face and a headache and like a flushed feeling or tinglyness/weakness in my arms and legs, so i just don't drink (BTW have had CBC, CMP, LFTS and US of liver and everything perfect and normal so it's not my liver... i am not a drinker, but i would like to have a beer every once in a while). Anyways... long story short... i wonder, if soft pretzels make the skin peel off the roof of my mouth everytime i eat one (doesn't happen with hard pretzels), and some other carb/sugary products that happens to, too, and now with the hot flashes the 2 times i tried to drink beer (don't know if it's cause being paleo you REALLY notice intolerances or allergies when u reintroduce)...i wonder if it's possible that i have an unknown allergy or intolerance to something weird, like yeast, hops, barley, barley malt, sulfite, or mold, or some additive or preservative? I scheduled allergy patch skin testing so i will post my results when i get them!!!
on November 24, 2012
at 02:42 PM
"increased IELs and blunting of villous tips and mild crypt hyperplasia" <-on a small intestine biopsy and the Dr didn't say you probably have celiac?!? The tTg bloodtest for celiac has a very high rate of false negatives. That's why a lot of gastroents still consider the biopsy the gold standard (usually including positive response to diet.) I think you can assume you have gluten intolerance or sensitivity if paleo diet has cleared up the IELs and the blunting though there are a small handful of other things that can cause similar results that paleo also might clear up. I'm a celiac and I only get the severe symptoms from gluten (wheat, rye, barley and most oats) including beer because beer is not gluten free being undistilled barley product. I hate the labored breathing feeling though I can get that from a medicine I'm sensitive to: Pepcid. It sounds possible to me that you simply have a gluten intolerance. You seem unaware that beer has gluten in it so I'm suspecting you don't really know about celiac disease and where gluten tends to be. To be more certain of this you could also do trials, test other foods one at a time while remaining completely gluten-free. Do some reading up on how to avoid hidden gluten from here though look for most recent info and lists, etc: http://forums.glutenfree.com/topic253.html
Do you have your bloodtest results available? The EMA test even at low levels is a "very strong predictor of a subsequent celiac disease diagnosis."