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CAS221

Ibs Or Really A Gluten Problem?

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Hello. I am new here. I was diagnosed with IBS when I was 20. That was 12 years ago. The last few years I have been reading about celiac and gluten intolerance. I am thinking about being tested. Where do I start? I asked my PCP a few years ago and she said the only definitive diagnosis is from a biopsy of the small intestine. So she said just to go gluten free and see if that helped, and if it did then just keep eating that way. I have tried, but find it so restrictive I give up easily. But, I am tired of feeling so tired and having the stomach symptoms! I did feel good when I did Atkins, so I am thinking that maybe I do have a problem with gluten or wheat. I just don't really understand the difference from a gluten or wheat intolerance or allergy. I will search around this site and read more to get more informed, but I would appreciate any advice. My husband thinks I am a little bit of a hypochondriac. I just think that I should feel better than I do. I have always had a problem with stomach bloating, cramping, and diarrhea. Plus, I am usually tired/foggy feeling, low energy, headaches, pms, and mild acne. I also have endometriosis, allergy and sinus problems.

Any advice would be greatly appreciated.

Thank you!

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In my humble opinion, a diagnosis of IBS means that you have digestive issues, but the doctors just have no clue.

In terms of receiving an official diagnosis, that's up to you.

I, along with many others on this board, chose the route of self-diagnosis. I had a blood test done which came back negative because I'd already been gluten-free for several weeks. Further than that, I simply dont' have the insurance to cover the specialists and biopsies needed. Plus after SO many years of being put off by doctors, I'm not eager to search around for one that believes me.

After several months of being gluten-free, I chose to get the Enterolab test which was an out of pocket expense. However, in my opinion, it was well worth it and also one of the most accurate tests available. (If the biopsy is taken from an area of the intenstine without any damage, it creates a false negative.) This was the final proof I needed to convince myself that gluten was an issue.

Seeing as how you felt better when you cut out the majority of wheat from your diet, I think it would be worth it to go the extra mile and try a gluten free diet for a few months. It's tough and there's a steep learning curve, but that's what this board is for.

Good luck, welcome to the board, and please feel free to ask any questions you may have!

Courtney


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

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Hey Cas221:

Welcome to the board! Happy you have found us....but sorry that you are having the symptoms you are having.

Unfortunately, many people with IBS and Celiac have overlapping symptoms. Many IBS patients are actually Celiacs, not IBS! So I definitely think it is worht looking into.

If you are going to get tested, continue eating gluten. Do not go gluten free as they can skew the results. Ask your doctor to run the full Celiac blood panel to get started. Make sure that it includes the "tTG" test. The medical community still says that a biopsy is needed, but many patients go gluten free without one, esp if they have positive bloodwork. We have people on this board who have positive bloodwork/biopsy, only positive bloodwork, no testing ever, etc. etc. etc....and everyone in between.

Either way, once you are done testing, it might be worth it, even if the results are negative, to try the gluten free diet. (I myself was diagnosed with IBS, spastic colon, fibromyalgia, heartburn, chronic fatigue, etc. etc. etc....and I had none of them....all my symptoms were gluten related).

A gluten allergy and non-Celiac gluten sensitivity/intolerance will not show up on the Celiac panel.

You can be allergy tested for a gluten allergy (IgE allergic reaction)

Non-Celiac gluten sensitivity/intolerance (generally an IgG intolerance/"delayed allergy" is how it can be described by some) means that an autoimmune reaction does not occur and damage to the villi in the small intestines is not happening. But, one can still have the same symptoms. The treatment is the same: gluten free diet.

All Celiacs are by definition, gluten sensitive/gluten intolerant. But not all gluten sensitive/gluten intolerant people are Celiacs. Celiac is an autoimmune disorder that causes us to react to gluten, the protein found in wheat, rye, barley, causing intestinal damage, and increasing our risk of all kinds of not nice disorders and such. Highly underdiagnosed (1 in 133 American's have it, but 97% are not diagnosed). Unfortunately, the medical community, in general, knows very little info about it...and what they do know, is often outdated. NIH just launched a Celiac Awareness Campaign (google NIH and Celiac) to help promote education for doctors and practitioners.

Hope this helps! If you decide to try the diet, let us know what we can do to help.....we have all been were you are, and would be happy to give you advice, pointers, recipes, brands, etc to help make life more normal!

Best of luck,

Laura

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Please don't accept you diagnosis of IBS. IBS is a lazy doctor's diagnosis and it's total bull. Atkins greatly cuts down on gluten consumption, which is probably why you felt better. I think your best bet is to get tested through Enterolab. It's a little pricey, at $369 for the complete test, but if you have a problem with gluten, it will show up on the results. Stool testing is much more sensitive than blood testing. If you can afford it, it's well worth it. Take a look at Enterolab.com and see what you think. I hope you feel better.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Hello. I am new here. I was diagnosed with IBS when I was 20. That was 12 years ago. The last few years I have been reading about celiac and gluten intolerance. I am thinking about being tested. Where do I start?

hi, forget about IBS and drs as well. as been said before, IBS is a diagnosis for drs who either have no clue or are too lazy or ignorant. something will irritate your bowel and it might be gluten. so, where to start is cutting it out of your diet, but be aware of all hidden sources and cross-contamination (you'll find a plenty of infos on this board)

But, I am tired of feeling so tired and having the stomach symptoms! I did feel good when I did Atkins, so I am thinking that maybe I do have a problem with gluten or wheat. I just don't really understand the difference from a gluten or wheat intolerance or allergy.
I understand you, I am tired too. I am not officially diagnosed, since my tests were all negative (blood/biopsy). I also had a good time on trying low-carb or Atkins, then it comes to my mind, that my problems must be related to carbs or grains. You cannot lose, it's not that difficult to adjust to gluten-free diet, and you are pretty motivitated to get rid of your stomach issues, aren't you?

I will search around this site and read more to get more informed, but I would appreciate any advice. My husband thinks I am a little bit of a hypochondriac. I just think that I should feel better than I do. I have always had a problem with stomach bloating, cramping, and diarrhea. Plus, I am usually tired/foggy feeling, low energy, headaches, pms, and mild acne. I also have endometriosis, allergy and sinus problems.

Any advice would be greatly appreciated.

Thank you!

don't let yourself bringing down by other people, it's your body and you have to live with it. nobody can tell you what to eat and what not to eat. I also have bloating as main issue, conatntly pregnant, gasses, before going glutenfree I had murder headaches (they're gone now), skin problems, tinnitus, murder pain during my period, low energy, water stools, seldom diarrhea though...I worn out a lot of drs the last 4-5 years, and every dr came up with IBS, though they did not ask other thinks or testes for other things. try glutenfree, you obviously feel better!!

good luck and best wishes,

Sonja

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If you want an "official" diagnosis don't go off the gluten, in fact eat lots more of it until you're done testing. It can be very hard to get an official diagnosis if you've been gluten free. I don't give a whole lot of credence to an official diagnosis personally. I think there are tons of people running to the toilet who were given false negatives.

I think you should read up on the consequences of ignoring gluten sensitivity, that might help motivate you to stick to the diet. A good book to read is "Dangerous Grains".

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I agree, great book, you should check it out.


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Hi CAS221...I find myself in a similar situation to you. I just joined last weekend because I'm finding I really need the support that seems to be here. Whether officially diagnosed or self diagnosed, the people here seem really supportive and knowlegeable.

I am in the middle of testing to see what's going on with me because I, too, have the stomach/intestinal problems--gas, bloating, diarrhea, etc, plus other non-intestinal issues that I never connected with celiac until I started doing research. I had a colonoscopy today because my GI is convinced (has been since the minute I walked in the door) that I have IBS, which I happen to agree with many on these boards, is a bogus diagnosis. I requested an endoscopy instead of the colonoscopy and the request was denied. Well, after the colonoscopy showed nothing, they scheduled me for the endoscopy for next week. I may go to Enterolab for gene testing as well because I have several children whom I suspect may have it as well.

It does appear that you have to have a level of gluten in your system to confirm a positive diagnosis, which is why I think my blood tests came back negative. I am eating lots of gluten now until the endoscopy (and feeling like you-know-what) and then will go off it--I'm at the point where I'm pretty sure my problems are gluten-related, so I'm anxious to see what happens when I do go off for an extended period of time. I am also now feeling like it's not going to be necessary to get the dr's blessing that I do have gluten sensitvity, because I don't feel like she believes it anyway.

Sorry to ramble, I mostly just want you to know that you are not alone in either your symptoms or your confusion about the issue. It's frustrating and really consumes you trying to figure it all out. As for the recipes and food, there are tons of recipes out there and tons of gluten free foods that taste great, it just may take some looking. I started this whole thing being very depressed about the possibility of having to give up gluten--"oh, the things I will miss", I thought. Now, however, I feel that if it is what needs to happen to make me feel better and stop the darn diarrhea (and other symptoms, that's just the worst one right now), then that's what needs to happen and I will do everything in my power to keep my body healthy! It's for me and my family--they deserve to have a happy and healthy spouse and mom.

Good luck to you--keep posting so we know what's going on with you! Just think--most chocolate is gluten free!


Dx'd with lymphocytic colitis 1/07

Dx'd by Enterolab 3/07--+IgA, +Ttg, DQ2 and DQ8

Dx'd celiac by Dr. Lewey 4/07--without +blood or biopsy

gluten-free 3/7/07

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A year ago when I was starting to put two and two together, I also remembered doing the Atkins diet several years ago....not my usual way of eating with so much meat etc. But the interesting thing was....I felt fabulous, and I lost weight very easily, and all my digestive problems evaporated. It wasn't until later that I realized this was because on Atkins I was eating zero grains, zero gluten. The light bulb went on....

A HUGE number of people who are erroneously, lazily, stupidly diagnosed with IBS actually have celiac disease, or at the very least, gluten sensitivity.

I can't stress enough the utter, near universal ignorance on the part of doctors with regard to celiac disease. You really have to be a detective with this....they are not little gods, they don't know everything. Be persistent in getting a solid look into the possibility of celiac/gluten sensitivity.

For myself.....my mom has celiac. I had a lot of problems which I thought was mainly due to dairy. Since I wasn't violently ill like mom, I didn't suspect celiac disease, which I'd always been told was very rare anyway. But after I started getting sicker, I started researching. I had not been eating a LOT of gluten for a long time. I did eat some, but not a lot, not regularly. This probably explains why my traditional blood testing was "normal." But I persisted....I used my own $$ to pay for the full Enterolab panel, which did a gene test, tested for antibodies, malabsorption, and also for casein sensitivity. $369....a good deal, and easy to do.

My doctor was up against a wall with the negative blood test. But my own Enterolab test showed I had the celiac gene, a gluten senstivity gene, autoimmune activity, and casein sensitivity. That's a LOT of informastion to digest, but it's more than my doctor could figure out with that stupid blood test.

Don't give up. And don't dismiss the Enterolab test just because your doctor doesn't know about it.


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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The main difference between a wheat intolerance and celiac disease is that the former causes some antibody response against wheat, the latter causes an autoimmune antibody response against wheat, barley, rye, and (in some) oats that damages your intestines.

The only way to find out if it will help you is to try it - and stick with it - for a month or two, at least. It could well be, as IBS is the most common misdiagnosis of celiac disease.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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