# Anyone test negative for Celiac but still did good on a gluten free diet?



## mrae (Apr 28, 2009)

Just wondering if anyone tested negative for Celiac but went ahead and tried eating gluten free and had some success with the results. My first blood work showed a slight allergy to wheat but my second one along with a biopsy showed negative to celiac. I was wondering if I should try to eat gluten free and see if maybe I might still have some success with it or would it just be a waist of time and money. Anybody do this?


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## BRAD B (Dec 15, 2005)

I have been tested for celiac d. also and my results came back neg. I started about a week ago cutting out all gluten the best I can. I'm getting stricter every day as I learn more. The good news is my D. and stomach control is getting better. Ill try to keep you updated. Please give it a try see if it helps you too. P.S. my issues are daily D./ uncontrollable bathroom urge due to stomach and anxiety for many years.Good luck,Brad


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## Kathleen M. (Nov 16, 1999)

Some people do seem to have a problem with the resistant starches the come along with the gluten in wheat.So when they limit wheat they may do pretty well. Often they don't need to be as careful (don't need to check every additive in every food). Although it can depend what they replace the wheat with and how they handle those starches. I think sometimes it is more that when people cut out gluten they also dramatically reduce the amount of total starch they eat as well.


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## faze action (Aug 6, 2009)

BRAD B said:


> I have been tested for celiac d. also and my results came back neg. I started about a week ago cutting out all gluten the best I can. I'm getting stricter every day as I learn more. The good news is my D. and stomach control is getting better. Ill try to keep you updated. Please give it a try see if it helps you too. P.S. my issues are daily D./ uncontrollable bathroom urge due to stomach and anxiety for many years.Good luck,Brad


Brad, how long do you plan on following the GF diet? I was thinking of 2-3 months, and then eating something with gluten to see if my symptoms would return... I guess that's good news if after only a week your symptoms seem to be improving.


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## crstar (Jun 29, 2009)

there r so many issues with allergic reactions.........for whatever reason, & there r many, our body can't seem to handle certain things........1 of the things i've become allergic 2, is my own thyroid hormones..........can u imagine what this does 2 my body........& i'll tell u, unless u've been here, u can't.........now, allergic reaction can come from many sources.........with gluten i'm wondering if it has anything 2 do with not having enough hydrochloric acid production??.........there r 2 branches to this thing.........1st off, if u don't produce enough HCl in the stomach, u do not digest all of the foods u eat, completely.........that partially digested food, eventually gets into the intestines.........this is a bad thing, cause food is suppose to b completely broken down, if it isn't, it not only feeds & produces an over-growth of candida, it causes leaky gut.........that leaky gut leads to candida over-growth all over the body.........when this gets a foothold, it can mean a struggle from then on just 2 survive.........candida causes allergies, sluggish organs, foggy brain & it's been found in the center of cancerous tumors.........it surrounds staff, making it very hard to kill..........by the way, it really likes those partially digest foods, it's a banquet.........then there's the thing, that when u don't produce enough HCl in the stomach, ur body over-produces gastrin & histamine........this histamine is the beginning of allergies...........so, go ahead & stop eating those things, but it won't get at the reason u have an allergy to those things we have become allergic to.........it just means that something is screwed up with the digestion process........there's 1 more thing u might want to consider, when u consume high glycemic foods, it raises blood glucose.........now our bodies go thru alot of hormonal changes trying to keep blood glucose in a lower range.........our brains don't do too well with higher blood sugar, not 2 mention the rest of our bodies..........the adrenals control our blood glucose & when things r not right & for whatever reason ur body can't get that glucose where it's suppose to b, it can really mess with the adrenal hormones, messing up the balance between all of them............1 of the adrenal hormones controls allergies & can stop them...........it stops pain, too.........so my point is, if u don't find out why things do not work the way they were designed, u will never get things 2 a place where u have no disease states in ur body..........u r always trying to catch up...........


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## mrae (Apr 28, 2009)

Brad B..... I have the exact same issue urgency issues really bad. I have to take my lomotil or I would not be able to leave my house and ever since I've had this I have had anxiety issues also. Thats pretty much the only symptom that I have now so even though my medicine is working I would like to find out if eating would help. I don't eat alot of meat or high fat foods, this seems to make it worse. I eat alot of rice, bread, tortillas, pancakes, peanut butter. Kinda the same thing every day. I do eat out at times but only because my medicine works so well but I can still feel a difference in how my body feels from eating the junk. Please keep me updated on how things turn out for you. What types of food have you been eating since switching to gluten free?


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## BRAD B (Dec 15, 2005)

Hey guys Im here to give you an update. I have been eating gluten free for about 3 weeks now. Im sure small amounts of gluten have slipped through my diet here or there that I was not aware of as this is a new learning process for me. I am feeling a lot better, not perfect and I am still taking some lomotil in the a.m.'s. The biggest thing I have noticed a change in is the urgency is a lot less. I still have my mind playing tricks but when it does its a lot easier to control. Also when I do eat out now I have been able to leave the restaurant without having to use the bathroom right away and even wait till the next day! On a side not I also had started align about a month and a half ago also but my stomach really started feeling better when I started my diet. Brad


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## Jakora (Jan 23, 2009)

I have had flare up periods when going off of gluten, even though I tested negative for celiac, has definitely made a significant difference. Everyone has different trigger foods that will cause them to go haywire with their bathroom habits. I would give it a try.


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## IBD/IBS Author (May 24, 2007)

Testing for Celiac disease is not 100% accurate all the time. There are many false-positives, and just as many false-negatives in the blood tests, and even sometimes with the endoscopy. If you feel gluten/wheat is an issue even if you have tested negative, then trying going gluten-free for at least 3 months. I have had IBD and IBS for 10+ years, and about 10 months ago started experiencing extreme bloating (I looked like I was 5 months pregnant) and gas after eating. I tested negative for Celiac, but was convinced it was a gluten/wheat problem so starting in June 2009 I went completely GF - gluten-free. By the end of 2 months I felt significantly better, and now after seven months GF I have NO gas, ever, and NO bloating, ever. It's not fixed my IBD issues, but that wasn't expected. Going GF isn't easy, or always straight forward. There are a lot of GF foods out there and GF flour mixes you can use to make your own GF foods. But, even so, there are a number of GF flours I cannot eat - like any kind of bean flour or millet, or sorghum. For now my gut just hasn't healed enough to be able to break down these flours. So, I only eat things made from rice flour, potato flour, tapioca flour/starch, and corn starch. You're going to have to really pay attention to what you're eating, how it makes you feel, and try to figure out what makes you feel better and what makes you feel worse. This isn't something that will happen over night or the same way for everyone. Probably best to keep a food diary, and to realize that eating out is extremly hard when eating GF, so you may have to eat at home or with what you've made. Also, realize that things like deli meat have gluten in them. So do most sauces, etc. If you want to go GF, do a lot of reading, talk to your doctor, and find a nutritionist who can help you out. Taking gluten out of my diet has helped with gas and bloating but I'm now dealing with low levels of folate and potassium and keeping my calorie intake at a high enough level. Be wise whenever you change your diet and realize you may actually feel worse before you feel better. Peace,Elizabeth


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## mrae (Apr 28, 2009)

When I talk to alot of people who are eating gluten free they seem to have had alot more symptoms than I have. I only have urgencie issues along with my stool being not formed. I don't have the gas, bloating or anything else everyone seems to have. Does anyone else only have the issues I have and if so what have you done to help?


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## gfme (Nov 12, 2010)

IBD/IBS Author said:


> Testing for Celiac disease is not 100% accurate all the time. There are many false-positives, and just as many false-negatives in the blood tests, and even sometimes with the endoscopy. If you feel gluten/wheat is an issue even if you have tested negative, then trying going gluten-free for at least 3 months. I have had IBD and IBS for 10+ years, and about 10 months ago started experiencing extreme bloating (I looked like I was 5 months pregnant) and gas after eating. I tested negative for Celiac, but was convinced it was a gluten/wheat problem so starting in June 2009 I went completely GF - gluten-free. By the end of 2 months I felt significantly better, and now after seven months GF I have NO gas, ever, and NO bloating, ever. It's not fixed my IBD issues, but that wasn't expected. Going GF isn't easy, or always straight forward. There are a lot of GF foods out there and GF flour mixes you can use to make your own GF foods. But, even so, there are a number of GF flours I cannot eat - like any kind of bean flour or millet, or sorghum. For now my gut just hasn't healed enough to be able to break down these flours. So, I only eat things made from rice flour, potato flour, tapioca flour/starch, and corn starch. You're going to have to really pay attention to what you're eating, how it makes you feel, and try to figure out what makes you feel better and what makes you feel worse. This isn't something that will happen over night or the same way for everyone. Probably best to keep a food diary, and to realize that eating out is extremly hard when eating GF, so you may have to eat at home or with what you've made. Also, realize that things like deli meat have gluten in them. So do most sauces, etc. If you want to go GF, do a lot of reading, talk to your doctor, and find a nutritionist who can help you out. Taking gluten out of my diet has helped with gas and bloating but I'm now dealing with low levels of folate and potassium and keeping my calorie intake at a high enough level. Be wise whenever you change your diet and realize you may actually feel worse before you feel better. Peace,Elizabeth


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## gfme (Nov 12, 2010)

This mirrors what I seem to be going through. So if I have been eating gluten free for approx 4 weeks prior to a blood test, can this reflect on the results? Also, are products listed "whole grains" different from "whole wheat"?


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## echrist (May 11, 2005)

mrae said:


> Just wondering if anyone tested negative for Celiac but went ahead and tried eating gluten free and had some success with the results. My first blood work showed a slight allergy to wheat but my second one along with a biopsy showed negative to celiac. I was wondering if I should try to eat gluten free and see if maybe I might still have some success with it or would it just be a waist of time and money. Anybody do this?


After my GI doc suggested that I try a gluten free diet, I gained back the 33 pounds that I had lost while they were trying to make a diagnosis. I had lost so much weight, I looked like I had been starving to death. It took me about one year to really figure out how to eat gluten free. In those days, about 5-6 years ago, there weren't nearly as many food items available in grocery stores and in restaurants that were gluten free. Now it's much much easier to find gluten free foods. Also, I found that it took me months to just learn how to eat gluten free, probably 4-5 months minimum. For example, I was getting sick whenever I would use our toaster to toast my rice bread - I was getting sick from the crumbs from my wife's bread and bagels. So, we bought a second toaster and now we have two, one regular and one gluten free. Eating out and eating gluten free can be very, very difficult. There are some chains like Outback, PF Changs, and Pei Wei, that have gluten free items on their menus but you still have to be careful and always, always, tell your server that you have to eat gluten free.


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