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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

"gluten Free" Products Making You Sick?
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29 posts in this topic

I am new. I have been on a gluten free diet for 10 years and after 3 years finally figured out where the gluten was hiding. I landed in the hospital with abdominal pain 7 years ago and after that I decided "zero tolerance" was the only way I'd be better.

It has rarely been a problem until this last year. I have had a pretty constant pain in my abdomen for most of the year. I never cheat on my diet, so it couldn't be that. It occurred to me recently that the allowable limits of gluten have gone up and there are more products that really aren't gluten free. I read all the rationalizations of why 5 ppm, 10 ppm, and 20 ppm are ok for celiacs. (Is this really true? If you have celiac you don't get damage from that amount? Even if you don't have symptoms? That is an aside.

The first time this was obvious was when I had a day where I ate only 3 things: organic turkey, a banana, and some Staff of Life bread. I called both companies and asked if there was any gluten in their products.I told them I was violently ill that day after I ate their product. Diestel Farms said there was never any gluten on their premises. Staff of Life sent me a plastic bag to ship the loaf to them to test. I never heard back from them. They swore they NEVER had a problem with any celiacs with their breads.

3 days ago I was talking with a man who has celiac about this subject. All of a sudden a light bulb went off and I realized I must be getting gluten in the gluten free bread, cereal, cookies, etc. Since I couldn't figure out if that really was the case I quit eating all products that could possibly have gluten. Emotionally, it sent me into a mild depression, but I am recovering. Within 2 days the pain disappeared! Wow.

So now I am left with what? Do I have to make my own flours, like the man I met with celiac? What do you do?

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I'm not sure where to start with this.

Many people with celiac disease have, or develop, other sensitivities. Just because you react badly to a food does note necessarily mean it contains gluten. Shrimp is gluten-free, but I get really sick if I eat it. I have celiac disease. I get sick if I eat shrimp. That does not mean that shrimp contain gluten. It just confirms my allergy to crustacean shellfish.

We see a lot of discussion here about ppm. The reality is that ppm is meaningless. What matters is the total amount of gluten that you actually consume. One slice of bread at 20 ppm is the same as four slices at 5 ppm. But wait! Does the product actually contain that much gluten?

The numbers reflect the sensitivity of the test that the producer uses. A truly gluten-free product contains 0 ppm, but there is no test available that can prove that. Zero is less than 20, and less than 10, and even less than 5 ppm.

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I'm not sure where to start with this.

Many people with celiac disease have, or develop, other sensitivities. Just because you react badly to a food does note necessarily mean it contains gluten. Shrimp is gluten-free, but I get really sick if I eat it. I have celiac disease. I get sick if I eat shrimp. That does not mean that shrimp contain gluten. It just confirms my allergy to crustacean shellfish.

We see a lot of discussion here about ppm. The reality is that ppm is meaningless. What matters is the total amount of gluten that you actually consume. One slice of bread at 20 ppm is the same as four slices at 5 ppm. But wait! Does the product actually contain that much gluten?

The numbers reflect the sensitivity of the test that the producer uses. A truly gluten-free product contains 0 ppm, but there is no test available that can prove that. Zero is less than 20, and less than 10, and even less than 5 ppm.

Thanks for your ideas. The ppm issue has seemed ridiculous since there is no real standard for measurement. How is one to know the total amount taken in?

I am feeling at a bit of a loss right now. I have had a rather "cushy" last 6 years with staying away from gluten. My reactions have become shorter with a good round of supplements and last only 4 -7 days now. But this year things have changed. I feel somewhat disappointed and perplexed at having to change my habits AGAIN and figure out how to make more foods that are gluten free. This man I met the other day makes his own flour out of jack fruit that he raises himself! Wow. He is super sensitive, too.

I have been tested for allergies and am good at identifying what to stay away from. It has been a cold realization that so many foods I use to be able to eat are now contaminated. So it is back to the drawing board.

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I decided to use only almond flour and coconut flour for baking needs and just eliminated grains entirely.

My thought is the nut flours have a far greater chance of being completely safe.

Plus they are higher in protein and fiber and lower in carbohydrates than say rice flour is.

It is just an idea...before you go to the trouble of making jackfruit flour. :unsure::blink::D

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I agree. Try dumping all grains. They all have gluten in them, just a different type then what causes the majority of folks problems. Could be your tolerance to them is finally worn down.

I feel so much better off of them. :) Man was not meant to eat grains. :blink: Paleo is the way to go. ;)

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It may not be that food which was previously uncontaminated is now contaminated. It may be that you have become sensitive to lower levels of contamination. I don't know the answer, but I know that it happened to me too.

What I do with grains is this. I buy them whole. I sort them grain by grain and remove ones which don't belong. I have found lots of gluten containing grains in my gluten free grain samples. Then I triple wash with soap and water, dry and grind. Only with this procedure am I able to eat grains. It would be a lot easier just to give them up, but I have limited enough food choices already.

I have to wash my nuts too, (after shelling) so nut flour isn't any easier.

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I do make my own flours too. That's the only way I am able to eat any baked goods. I'm allergic to rice and to almonds, millet is too dificult to sort and has lots of gluten-grains in it. Buckwheat is quite easy to sort and make great flour for both bread and sweet cookies or ginger bread. I make garbanzo flour and white bean flour - wash them, then soak for 12 hours, dry and grind. Mungo beans can be ground quite easy too. Quinoa makes great flour to add to pizza dough or small pastry, but is difficult to sort and can't be washed quite well if there's any possibility of cc. I do buy tapioka starch, seems like that one has very little contamination. You can use boiled mashed potatoes to add better texture to baked goods. For sweet cakes, I use poppy seed, hazelnuts, coconut (from whole fresh coconuts), apples, bananas, carrot, pinnapple. For bread, I now tried the simplest recipe ever - mix buckwheat flour with salt and buttermilk (with live lactobacilli), leave for about 14 hrs at 27-37

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I do much of those things too. It is well worth it. In my case, I haven't found a sugar which I can tolerate. Different brands bother me to different extents so I don't think that it is a sugar intolerance. I'll keep trying, and I'm also going to try growing my own next season.

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Thanks for your ideas. The ppm issue has seemed ridiculous since there is no real standard for measurement. How is one to know the total amount taken in?

I am feeling at a bit of a loss right now. I have had a rather "cushy" last 6 years with staying away from gluten. My reactions have become shorter with a good round of supplements and last only 4 -7 days now. But this year things have changed. I feel somewhat disappointed and perplexed at having to change my habits AGAIN and figure out how to make more foods that are gluten free. This man I met the other day makes his own flour out of jack fruit that he raises himself! Wow. He is super sensitive, too.

I have been tested for allergies and am good at identifying what to stay away from. It has been a cold realization that so many foods I use to be able to eat are now contaminated. So it is back to the drawing board.

Peter put forth a pretty good explanation of what may cause a reaction, aside from a gluten hit. I also have had this experience with gums used as thickeners. There is no gluten in gums and they are completely safe for Celiacs yet I have some of the worst reactions to gums I have ever had. So, assuming that breads and other gluten-free foods are contaminated is incorrect. Sure, you may get the occasional loaf of bread that has higher levels via some slip-up at the point of origin but to say that gluten free breads are not gluten free is irresponsible. If this were true, Celiacs would be reporting all kinds of reactions and problems and that hasn't happened. Gluten-free companies would no longer sell their product because they would be getting sued.

I am a super sensitive Celiac and get sick from crumbs....very small amounts of crumbs have nearly sent me to the ER. I do not, with very few exceptions, eat food from shared lines. Yet, I am healthy and asymptomatic. What many people just don't seem to grasp is that Celiacs have much more delicate GI tracts than the general public without Celiac Disease. There are many foods that do not contain gluten but they may make you sick. There are those who cannot tolerate any grains and it has nothing to do with gluten. There is no gluten in fruit or the waxes they use to coat fruit yet people still react...probably because if they don't wash their fruit well enough and some of the wax remains, it could make them sick because wax is very hard to digest anyway. These reactions can mimic that of a gluten reaction....that is what gums do to me. You will drive yourself barmy if you think that all your reactions are gluten related. You also are older than you were when diagnosed and that can change things. Bodies and reactions to other things change.

Most reputable companies which manufacture gluten-free goods specifically for the Celiac population batch test their products for compliance to very low levels of gluten but you cannot test to zero. That doesn't mean there is gluten in the product. Occasionally I will eat something that does not make me feel too great but I don't just assume it was from gluten. It happens and I don't get overly worried about it. If you keep getting sick then it could very well be another sensitivity you have developed. That happened to me about 3 years into the gluten-free diet....dairy became a problem so that has been largely omitted...I can tolerate small amounts but that's about it.

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I have noticed a big range of tolerance levels of gluten even among those who call themselves super sensitives. Some think that they react to a crumb. While some think that they react to an invisible bit of flour dust in the air. Just because something doesn't make someone else sick doesn't mean that it won't make you sick. I have learned this the hard way several times. I have gotten to know who is as sensitive as I am, or more so, and I will listen to their reactions, but others I treat with caution. After years of gluten reactions, you get to know when you are having a gluten reaction. It is important to listen to your body and stop eating foods which make you sick. Whether it is a gluten reaction or not isn't worth arguing about. If it makes you sick, stop eating it.

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Everyone's ideas are helpful. Thank you. I will need to learn to make my own flour. The idea about sorting the grains is totally new. I've never made flour even though I bought an attachment for my blender just for grains. What sort of grinder do you use?

In my case, I have worked for years to find what I am sensitive to. I am a very disciplined person when it comes to food. I really dislike being in severe pain, which is what happens with gluten. As I stated, I have kept my diet the same except for gluten free foods. A week ago I quit eat EVERYTHING that might have gluten in it... bread, corn tortillas, corn chips, cake mixes, cereal, etc. Within just a few days the constant pain I have been in is gone. Now I am working on figuring out what is safe for me and what is not safe.

I wrote to Anna's Gluten Free Breads and asked her about their bread mixes yesterday. I met her years ago at a Celiac Convention in Palo Alto. She is a sensitive celiac also. Her CS person told me their facility is totally gluten, nut, soy, corn and something else, free. I use to use her mixes, but got tired of baking and switched to already made foods. I am going to try again once I know I am stable again.

It sounds like many of you have lots of experience with this. I look forward to learning more from you. Is there a thread for hints for cooking? I don't even know what a grain looks like. I only buy organic whole rice.

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I do make my own flours too. That's the only way I am able to eat any baked goods. I'm allergic to rice and to almonds, millet is too dificult to sort and has lots of gluten-grains in it. Buckwheat is quite easy to sort and make great flour for both bread and sweet cookies or ginger bread. I make garbanzo flour and white bean flour - wash them, then soak for 12 hours, dry and grind. Mungo beans can be ground quite easy too. Quinoa makes great flour to add to pizza dough or small pastry, but is difficult to sort and can't be washed quite well if there's any possibility of cc. I do buy tapioka starch, seems like that one has very little contamination. You can use boiled mashed potatoes to add better texture to baked goods. For sweet cakes, I use poppy seed, hazelnuts, coconut (from whole fresh coconuts), apples, bananas, carrot, pinnapple. For bread, I now tried the simplest recipe ever - mix buckwheat flour with salt and buttermilk (with live lactobacilli), leave for about 14 hrs at 27-37

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I do much of those things too. It is well worth it. In my case, I haven't found a sugar which I can tolerate. Different brands bother me to different extents so I don't think that it is a sugar intolerance. I'll keep trying, and I'm also going to try growing my own next season.

There is a fellow in the Kona Farmer's Market who grows his own sugar cane and has a press to get the sweet juice out. Usually sugar gives me a rush, but this stuff feels just like regular food, no rush.

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I agree. Try dumping all grains. They all have gluten in them, just a different type then what causes the majority of folks problems. Could be your tolerance to them is finally worn down.

I feel so much better off of them. :) Man was not meant to eat grains. :blink: Paleo is the way to go. ;)

Your theory may be correct. It is certainly worth testing. I am part Eskimo and my digestive system is like my dad's, who had celiac. My brother took after my Greek mom and can eat gluten, dairy, and everything I can't eat. Life is not fair.

I like your avatar...haahaa. I am going to look for one.

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Hi Padma,

I suggest you review the ingredients of all the gluten-free products that you removed from your diet. Look for all common ingredients. Many, many gluten-free baked goods have both soy and potato flour in them, and dairy and eggs are not rare either. All of these are common food intolerances for many of us, although not all will have any particular one.

Potatoes are part of the nightshade family along with tomatoes and peppers. So if you have problems with potatoes there is a good chance you will have problems with tomatoes and peppers too.

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I agree. Try dumping all grains. They all have gluten in them, just a different type then what causes the majority of folks problems. Could be your tolerance to them is finally worn down.

I feel so much better off of them. :) Man was not meant to eat grains. :blink: Paleo is the way to go. ;)

As much as I dont want to ,, I have to agree.

I was vegetarian or vegan for most of my adult life. I have desperately tried to keep non-meat sources protein in my diet . My body has decided other wise :lol: The foods I can currently tolerate are meats ,certain veggies ,certain fruits and very small amounts of white rice. I need to listen to my body ;)

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As much as I dont want to ,, I have to agree.

I was vegetarian or vegan for most of my adult life. I have desperately tried to keep non-meat sources protein in my diet . My body has decided other wise :lol: The foods I can currently tolerate are meats ,certain veggies ,certain fruits and very small amounts of white rice. I need to listen to my body ;)

I am beginning to think I need to be "paleo" :huh: ...sigh...I am 100% gluten free, dairy-free, soy-free yet still feel lousy. I make my own bread (well, hubby makes it:>), mostly eat meats, seafood, veggies, some brown rice, fruit and I still feel sick to my stomach or "racy". Sometimes, I have an Udi's product or Foods by George or Erewhon cereal with rice milk or coconut milk. For a treat, I tried a boom-choco-boom bar. These products are all gluten-free/SF/CF but they make me feel "racy" and/or nauseous. I have stopped having D, but I still feel lousy. Maybe I don't have enough time healing under my belt yet?

Maybe it IS all grains, not just the gluten. Maybe it is something else. I had IgG/Elisa blood testing. SOY was a culprit. That's been out of my diet for a year.

I feel as if everything is a potential time-bomb going in my mouth. Eating is like Russian roulette. Bummer!

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I am beginning to think I need to be "paleo" :huh: ...sigh...I am 100% gluten free, dairy-free, soy-free yet still feel lousy. I make my own bread (well, hubby makes it:>), mostly eat meats, seafood, veggies, some brown rice, fruit and I still feel sick to my stomach or "racy". Sometimes, I have an Udi's product or Foods by George or Erewhon cereal with rice milk or coconut milk. For a treat, I tried a boom-choco-boom bar. These products are all gluten-free/SF/CF but they make me feel "racy" and/or nauseous. I have stopped having D, but I still feel lousy. Maybe I don't have enough time healing under my belt yet?

Maybe it IS all grains, not just the gluten. Maybe it is something else. I had IgG/Elisa blood testing. SOY was a culprit. That's been out of my diet for a year.

I feel as if everything is a potential time-bomb going in my mouth. Eating is like Russian roulette. Bummer!

I can't eat nightshades (potatoes, tomatoes, peppers) or coconut. Maybe you are reacting to those also?

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I can't eat nightshades (potatoes, tomatoes, peppers) or coconut. Maybe you are reacting to those also?

Thanks for the suggestion. You are not the first one to tell me this, but I was so hoping it wasn't a problem for me! :unsure: I have to say, since last year, tomatoes burn my throat. I cannot digest peppers.. I LOVE coconut, so that one's tough to surrender, and this Irish lass eats potatoes A LOT. :D ....I'm going to cut those all out and see what happens! Maybe it will help with my joint pain. Who knows. Any relief would be great!

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Hopefully you like sweet potatoes or yams? They are not the same family as regular white potatoes and probably won't make you sick. I can eat sweet potatoes just fine, but not the white potatoes. Sweet potatoes are good you anyway, they have lots of orange stuff in them. :D

By the way , coconut is just something that bothers me, it may not bother you at all.

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Weird thing, I can eat potatoes I get from the farmer's market, but not ones from the store. Maybe it is the sprout inhibitor which bothers me.

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Hopefully you like sweet potatoes or yams? They are not the same family as regular white potatoes and probably won't make you sick. I can eat sweet potatoes just fine, but not the white potatoes. Sweet potatoes are good you anyway, they have lots of orange stuff in them. :D

By the way , coconut is just something that bothers me, it may not bother you at all.

Hi GFinDC!

yes, I LOVE sweet potatoes and yams. I eat them regularly. The sweet yellow ones are really my favorite, but we only see them during the Fall. I am in upstate NY. Thanks for your help!

Cheers!

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Is it possible that the problem is eating several 'gluten free' products at once or on the same day? For example, if you're eating two pieces of bread (10 ppm each, let's say), plus a glass of rice milk (5 ppm) and a couple of gluten-free cookies (10 ppm each), then you're getting 45 ppm that day. Maybe each of those separately wouldn't make you react, but all of them together might?

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Is it possible that the problem is eating several 'gluten free' products at once or on the same day? For example, if you're eating two pieces of bread (10 ppm each, let's say), plus a glass of rice milk (5 ppm) and a couple of gluten-free cookies (10 ppm each), then you're getting 45 ppm that day. Maybe each of those separately wouldn't make you react, but all of them together might?

good point! ;)

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I fully believe that all grains are damaging and if one is not reacting to them, it is only because just as with wheat,rye and barley, the sensitivity and damage has not reached the level that it can be recognized, YET. Just as we all ate those grains that fall within the generally accepted definition of celiac disease without awareness of how it was hurting us for so many years. I haven't been able to eat any substitute grains since going gluten-free and now, am reacting to corn in just the same manner as I would any bite of wheat with all the same symptoms, but I realize the extent of my damage is severe. I will never touch another grain and being as sick as I am, have no appetite for them - lucky me....;o)

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      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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