Avoiding Gluten Seems To Be Working...

[coldnight]

After being diagnosed with IBS and having symptoms for about 10 years, I'd really like to know if this is the answer.

Through a long process of eliminating foods that made me feel ill (common for IBS I suppose) I stumbled across a simple diet that suddenly caused constipation, something I've never had in my life. So, I started looking at the foods, and they were all gluten free.

So, I went out of my way to be absolutely gluten free, as best I could. And symptoms have greatly improved over the last month, so that I have dropped off most of the medicine was taking (8+ Lomotil, 120mg of codeine, Zofran, Immodium sometimes) just to avoid C.

Anyway, I signed up to have an enterlab genetic test, to see if that will rule out celiac or make it a possibility. But I was hoping for some input on whether this is a familiar story. I have all the symptoms of IBS, low energy, anxiety (caused by IBS imo), D, cramping, bloating... etc.

My current attempt at a gluten-free diet consists of :

Red meat (some kind of steak)

White Rice

Salad

For condiments I am using Wishbone balsamic vinaigrette salad dressing, and they say it's gluten-free. Am I right on that count?

I was using La Choy soy sauce, which seemed to be ok for a while, then I bought a new bottle of Lite style, and I started getting sick hours after eating every night. As soon as I cut it out, I went back to being fine. I had eaten La Choy for months before this without the D kicking in within a couple hours. So, is it just my system being nuts, or is it possible that La Choy can change their ingredients such that one batch would be fine, but another might not?

Anyway, I switched to a BBQ sauce which claims to be gluten free and haven't had any problems since, at least not on that level of severity.

The only thing I snack on is Oberto beef jerky's gluten free brands, verified with them on the phone as well.

All my symptoms have improved, gas is gone, D is nearly gone, having formed stools... which I normally don't unless taking the aforementioned level of medicine. Bloat is gone. I feel a lot better, although not perfect, but some of it I think is withdrawal from all the medication.

One contradictory thing, is that I've actually lost a lot of weight since going on the gluten free diet, of course I am eating a LOT less, and I am thinking the codeine and lomotil really slowed down the metabolism.

Also, I had a blood test about 6 years ago, and an endoscopy about 3 years ago. Both were negative, the doctor said he was not looking for celiac disease he said something to the effect of "I only went X far..." Where X is some part of the GI tract, I think he was saying he would have done it differently if he was trying to diagnose celiac disease.

----

But basically, I wanted to lay out a quick story and see if people with first hand experience thought this sounded like celiac, normal IBS, a problem with resistant starches, a problem with carbohydrates, or just a mild problem with wheat in general. I read the symptoms can vary quite a bit, but I'm hoping for some advice on what I should do or try next.

Thank you!

[Gemini]

After being diagnosed with IBS and having symptoms for about 10 years, I'd really like to know if this is the answer.

Through a long process of eliminating foods that made me feel ill (common for IBS I suppose) I stumbled across a simple diet that suddenly caused constipation, something I've never had in my life. So, I started looking at the foods, and they were all gluten free.

So, I went out of my way to be absolutely gluten free, as best I could. And symptoms have greatly improved over the last month, so that I have dropped off most of the medicine was taking (8+ Lomotil, 120mg of codeine, Zofran, Immodium sometimes) just to avoid C.

Anyway, I signed up to have an enterlab genetic test, to see if that will rule out celiac or make it a possibility. But I was hoping for some input on whether this is a familiar story. I have all the symptoms of IBS, low energy, anxiety (caused by IBS imo), D, cramping, bloating... etc.

My current attempt at a gluten-free diet consists of :

Red meat (some kind of steak)

White Rice

Salad

For condiments I am using Wishbone balsamic vinaigrette salad dressing, and they say it's gluten-free. Am I right on that count?

I was using La Choy soy sauce, which seemed to be ok for a while, then I bought a new bottle of Lite style, and I started getting sick hours after eating every night. As soon as I cut it out, I went back to being fine. I had eaten La Choy for months before this without the D kicking in within a couple hours. So, is it just my system being nuts, or is it possible that La Choy can change their ingredients such that one batch would be fine, but another might not?

Anyway, I switched to a BBQ sauce which claims to be gluten free and haven't had any problems since, at least not on that level of severity.

The only thing I snack on is Oberto beef jerky's gluten free brands, verified with them on the phone as well.

All my symptoms have improved, gas is gone, D is nearly gone, having formed stools... which I normally don't unless taking the aforementioned level of medicine. Bloat is gone. I feel a lot better, although not perfect, but some of it I think is withdrawal from all the medication.

One contradictory thing, is that I've actually lost a lot of weight since going on the gluten free diet, of course I am eating a LOT less, and I am thinking the codeine and lomotil really slowed down the metabolism.

Also, I had a blood test about 6 years ago, and an endoscopy about 3 years ago. Both were negative, the doctor said he was not looking for celiac disease he said something to the effect of "I only went X far..." Where X is some part of the GI tract, I think he was saying he would have done it differently if he was trying to diagnose celiac disease.

----

But basically, I wanted to lay out a quick story and see if people with first hand experience thought this sounded like celiac, normal IBS, a problem with resistant starches, a problem with carbohydrates, or just a mild problem with wheat in general. I read the symptoms can vary quite a bit, but I'm hoping for some advice on what I should do or try next.

Thank you!

From what you have described, it certainly could mean you have Celiac or gluten sensitivity. Many people do an elimination diet to find some answers after being told they have IBS. I personally do think IBS is just a label they have given to a bunch of symptoms that are actually indicative of a bigger problem like intolerances or allergies. Testing costs money and many people do not like to go through all the allergy testing and then be told they cannot have certain foods. This is what medicine has become today.....find the right medication to suppress symptoms, whether that's the answer or not. This is why people go for YEARS without a diagnosis and that's sad.

The soy sauce isn't too much of a mystery because most soy sauces contain wheat. Unless it is labeled wheat free, it will make a Celiac sick and should be avoided. I am not sure why you did not have

trouble with one of your choices, other than it may have been wheat free without you realizing it.

You have a choice. You can start to ingest lots of gluten and go for testing or if you are the type that is comfortable without an "official" diagnosis, you can go gluten-free for good, if that helps your overall health.

If a product is labeled gluten-free, then it is gluten-free. I highly doubt, in this litigious world we live in, that any company would label a product gluten-free and have it not be. For other items, calling the manufacturer is always a plus if you are unsure of it's gluten-free status.

Good luck to you and I hope your improvement continues. I would think about testing but if eating gluten makes you too sick to stick it out for that, don't feel bad....many people are in that same boat!

[TracyB]

From what you have described, it certainly could mean you have Celiac or gluten sensitivity. Many people do an elimination diet to find some answers after being told they have IBS. I personally do think IBS is just a label they have given to a bunch of symptoms that are actually indicative of a bigger problem like intolerances or allergies. Testing costs money and many people do not like to go through all the allergy testing and then be told they cannot have certain foods. This is what medicine has become today.....find the right medication to suppress symptoms, whether that's the answer or not. This is why people go for YEARS without a diagnosis and that's sad.

The soy sauce isn't too much of a mystery because most soy sauces contain wheat. Unless it is labeled wheat free, it will make a Celiac sick and should be avoided. I am not sure why you did not have

trouble with one of your choices, other than it may have been wheat free without you realizing it.

You have a choice. You can start to ingest lots of gluten and go for testing or if you are the type that is comfortable without an "official" diagnosis, you can go gluten-free for good, if that helps your overall health.

If a product is labeled gluten-free, then it is gluten-free. I highly doubt, in this litigious world we live in, that any company would label a product gluten-free and have it not be. For other items, calling the manufacturer is always a plus if you are unsure of it's gluten-free status.

Good luck to you and I hope your improvement continues. I would think about testing but if eating gluten makes you too sick to stick it out for that, don't feel bad....many people are in that same boat!

Hi Coldnight and Gemini,

Good luck finding the answers you need Coldnight! It's difficult being told you have IBS esp. if you feel it is something more.

I was diagnosed with IBS at age 3. Something unheard of nowadays. You comment Gemini about IBS basically being a cop-out instead of looking to find intolerances or allergies is probably true. I have 3 siblings, all with a variety of very bad allergies. I never had any of the allergies they had - and I doubt my mother did anything different in her 3rd preg. with me than she did with the other 3. She was a smoker and so was my dad.

About 6-8 years ago I started having symptoms of asthma in the fall only and found out indirectly through an allergist that it was likely a mold allergy (he was testing my son and getting a family history from me).

I've always wondered though about the IBS. I had read many years ago about how a doctor ought to treat a patient they believe has IBS - it made me angry to read that a doctor believes that somebody with IBS has some sort of mental issue or stress or anxiety that causes it. It was quite humiliating.

So I think that I may have a food intolerance, if not gluten, than something (or an allergy). When my 3 year old daughter was an infant she had prolonged blood in her stool. Initially I had to do a complete elimination diet as I was breastfeeding her. Looking back I felt pretty darn good - hungry but good - LOL! I had cut out soy and all soy products, nuts, all dairy, can't remember the others - but I was on a basic diet of fruit, vegs, meats, etc.

If my doctor ever does send a referral for me for a gastro (I haven't heard yet) and I don't have any problems with my intestine, than I will definitely go gluten free (and soy and dairy).

I think you're on the right track coldnight - but I do think that you will need to be really careful about the condiments you're choosing. People in here are careful about things like toasters too - they have their own - cross-contamination with gluten can cause pain for a lot of the people in here.

TracyB

[coldnight]

Thanks for the info. I don't want to go back to eating gluten again, I discussed this with the GI. The problem is, if I have to eat wheat for 6 weeks, I'll have to go way back up on the medicines that slow motility, and will probably have trouble coming down off them... because of tolerance and because I get incredibly painful constipation when taking all that medication and not eating wheat. It happens pretty quick, I think there is a delay, like I'm still taking the medicine because I expect to be sick, and then I'm not. I really do not want to deal with that again, it was quite unpleasant.

Gemini, I'm curious about which thing you think might be problematic? Everyone says La Choy is gluten free on the net, but they will not label it that way. They say they will research the UPC I found out after it started making me sick, so I started researching it. I'm fairly sure they change their suppliers/ingredients and that is why it was ok for a while, then became terrible. But I could be wrong.

Everything else I have talked to the manufacturer about. Except for the salad and the meat, which I thought was fine.

Tracy, Yes, the way they treat IBS patients is ridiculous. I've been given every SSRI there is, and I cannot tolerate them for more than 7 days, they cause severe stomach problems. I've been told many times that the symptoms are all in my head, and that if I don't stick to an anti-depressant, I will never be over anxiety. And since I have anxiety, I have depression. However, when I am not sick to my stomach 24/7, I have very little anxiety. It's not really a "chicken or the egg" question for me, I got physically ill about a 6 months before I started worrying about it. Pulling over on the highway, i'd just chalk it up to a stomach bug, or some bad food, but the more common it got, the more I started to worry about situations where bathrooms were inaccessible. I still have some of that ingrained anxiety, but the better I feel physically, the less anxiety I have. I wouldn't even be able to function at work or do anything if I was eating gluten on this dose of medicine. I actually didn't work at all for over 4 years and rarely left the house, because even going to the grocery store was a miserable experience. Anxiety plays a role, but it's insulting when they act like it is the source of the problem. In my opinion, same as yours, IBS is just them not knowing what else to call it. Most of the indepth studies show that it can be traced back to some sort of bad immune response. After the improvement I have seen, whether it lasts or it turns into a 100% improvement or not... I think that a lot of IBS symptoms are probably some level of food sensitivity in disguise. And probably the bulk of them are related to gluten, given the statistics on world wide gluten sensitivity, and how it seems to be fairly under recognized in the US.

Anyway, thanks for the replies. I'll see what enterolab has to say, if I don't even have the genes for it, then it's not celiac disease, but the diet has helped so much that I can't see any reason I would stop it. Diagnosis or not, it might just be easier to call it celiac or gluten allergy. A lot of manufacturers and restaurants are starting to recognize it, hopefully more will in the future, especially for those people who are so incredibly sensitive to it.

[ShayFL]

Consider the SCD Specific Carbohydrate Diet as it is very healthy and supplies much needed fiber which your current diet is lacking. You get easy to absorb carbs that wont feed the bad bacteria in your gut plus it is naturally gluten-free.

www.pecanbread.com

This is a good place to learn about it. It talks a lot about Autism, but if you buy the book "Breaking the Vicious Cycle" you will learn the diet is for Celiac, Crohns and IBS too. It works...I know cuz Im on it!

[Gemini]

Gemini, I'm curious about which thing you think might be problematic? Everyone says La Choy is gluten free on the net, but they will not label it that way. They say they will research the UPC I found out after it started making me sick, so I started researching it. I'm fairly sure they change their suppliers/ingredients and that is why it was ok for a while, then became terrible. But I could be wrong.

I do not use any mainstream produced food products so am not too familiar with La Choy products. I would not believe everything you hear on the net either. It may be gluten-free but I do not know. I use San J Tamari, which is basically soy sauce, and I buy it at Whole Foods Market. There are different kinds but there is one clearly labeled wheat free and I have never had a problem with it. Soy is sneaky....depending on how it is processed, it may contain wheat. You could be absolutely correct about changing ingredients also.....that is a common problem. San J seems to be pretty consistent, though.

Tracy....

As far as the IBS thing goes, any woman or man that was originally diagnosed with IBS and then, years later, Celiac, ought to sue the doctor. Only then will we get them to wake up and properly diagnose people. I am Celiac and my mother has many, many symptoms herself, including osteoporosis, and when she pressed for some testing, he looked at her and in that condescending doctor way said, "Beverly, you DO NOT have Celiac, you have IBS!" This was after she told him I was diagnosed with celiac disease. Now, she doesn't want to be bothered because she's in her mid 70's and is afraid other doctors will treat her like a dim bulb. If I been there, I KNOW I would have slapped him! Oh yeah, I also have a double DQ2 genetic marker for Celiac, which means it's on BOTH sides of my family and this dope still would not test her. There ought to be a law......

[coldnight]

Consider the SCD Specific Carbohydrate Diet as it is very healthy and supplies much needed fiber which your current diet is lacking. You get easy to absorb carbs that wont feed the bad bacteria in your gut plus it is naturally gluten-free.

www.pecanbread.com

This is a good place to learn about it. It talks a lot about Autism, but if you buy the book "Breaking the Vicious Cycle" you will learn the diet is for Celiac, Crohns and IBS too. It works...I know cuz Im on it!

Will do, I could stand to cut some carbs. I do drink coke, but I went off it for a long time and had no noticeable improvement, so I keep it. I do take a lot of fiber, should have added that, as part of the IBS treatment, it's never done much good though, I basically take it now because of all the studies that show it has all sorts of health benefits. I know a guy who got diverticulosis at like 22. So... I think I'll keep taking it. =)

But thank you for the book recommendation, I had been wondering if there was a good book on the diets.

Gemini, yea, that makes sense. I think that's the deal with La Choy, the changing of suppliers/ingredients... but I could be wrong.

Thank you all for your help and input. I'm excited to see what enterolab says, I guess until they rule it out, it's just guesswork.