Can You Have Ibs And celiac disease?

[gointribal]

I don't know if I have celiac disease for sure. My blood test were negative and the dr wants to treat me for IBS before we do a EDG. Hes got me on metamuscil and glycopyrrolate anyone else done this? I am kinda upset I really wish I knew what was wrong. If I do have IBS it doesn't explain the weird sores I get on my head and legs, the flu like symptoms I get and being cold all the time (and I don't have a thyroid problem)! I'm at a loss

[ebrbetty]

yes you can have both, I do. most Drs will tell you you have IBS if they can't find anything else wrong, have you had many tests?

I sent you a email with the site

[gointribal]

thank you so much for that site I was just on it Yeah, i've had a lot of tests done, I had a the celiac disease blood test, colonoscopy, thyroid, allergy test, they checked my all my organ function. The only thing they haven't done is the EDG. I am gathering stool samples for the next set of tests (boy has that been fun ). What I've been gluten-free for a while will that affect the stool samples?

[jenvan]

tribal-

were you gluten-free when you had the blood work done for celiac? being gluten-free will definintely effect any kind of test results you might have. they will not be accurate. i think it is possible someone might have celiac and ibs, but i think a good portion of those with ibs do not in fact have ibs. ibs should be a diagnosis of elmination--meaning all other options have been exhausted. unfortunately, this is often not how its done. i was diagnosed with ibs for years before we figured out it was not ibs, but celiac. i did fiber therapy, some meds, nothing really helped. what are your symptoms? have you been to a dermo to have a biopsy of your sores or have them diagnosed?

[Guest nini]

I firmly believe that IBS is just a symptom... Not a diagnosis. Any Dr. that gives a definitive diagnosis of IBS is a cop out... that is just my opinion, but seriously, it's just a collection of symptoms and they put that label on anyone they can't figure out.

Going gluten free before testing for Celiac will definitely affect the results and skew them, and more than likely you will get a false negative.

Your BEST diagnostic tool for Gluten Intolerance or Celiac is how do you respond to the gluten free diet? Do your symptoms get better when you are gluten free?

[par18]

I firmly believe that IBS is just a symptom... Not a diagnosis. Any Dr. that gives a definitive diagnosis of IBS is a cop out... that is just my opinion, but seriously, it's just a collection of symptoms and they put that label on anyone they can't figure out.

Going gluten free before testing for Celiac will definitely affect the results and skew them, and more than likely you will get a false negative.

Your BEST diagnostic tool for Gluten Intolerance or Celiac is how do you respond to the gluten free diet? Do your symptoms get better when you are gluten free?

[/

Nini

I definitely agree with your response. IBS I would say is only IBS if it would respond to medication. This happened to my wife and after a short time on medication her symptoms went away and she stopped taking the medicine. I can't believe a person will keep IBS for months or years. I had definite IBS symptoms until I went on the gluten-free diet ten months ago. This was after a positive biopsy on small intestine. The second day on diet I had no more symptoms and have not had any to this day. Yes I have Celiac disease but I don't really care what you call it if I stay on the diet I will feel fine. I don't feel any different as a person with celiac disease but my lifestyle is somewhat altered. I really believe most IBS symptoms are related to what a person eats more than anything else. Call it allergy, sensitivity, intolerance, or whatever because avoiding the offending items usually work the best. The thing about celiac disease is that there is a name for the condition so we are singled out as a group. Most of my friends never bring it up in a conversation because I don't act any different than I did before except fewer trips to the bathroom. Usually I "wear out " most of them on the golf course because I feel so good. To tell you the truth I actually feel sorry for some of them because they have health issues and don't have an answer. In closing I have observed that most people would rather try every medicine possible before giving up any of their "comfort" foods! Everyone have a nice day.

Tom

[ebrbetty]

I'm gluten-free and still have IBS symptoms, I do agree Dr's use the term much too much when they can't figure out whats wrong, I can tell the difference when I've been glutened and when my IBS is acting up, though I do think going gluten-free will help my symptoms of IBS and hopefully my gastritis and gerd as well

I was 90% gluten-free when I had my celiac blood tests..The Dr and I decided to go ahead and take the test anyway [both of us thinking it would be negative] to our surprise I came back borderline positive, I remember him saying "I wonder how high the #'s would have been if you were eating your normal amounts of gluten!"

I wonder if the IBS, gastritis and gerd are keeping me from healing as quickly as so many of you have, its been over 2 months and I still have daily stomach pain, many of you talk of feeling great within a couple weeks...time will only tell

[jenvan]

tribal-

unfortunately i didn't feel better within a few weeks either. i actually got worse initially...including a new form of stomach aches i had never had that stuck with me for several months. i'd say it was several months before i started noticing slight improvement... i am just over a gluten-free now, i have definitely improved, but have some on-going long-term type symptoms still. eliminating dairy also helped--i might have improved a bit faster had i tried that earlier. my 'ibs' type symptoms are really gone, so for myself, i think i never had it. gerd and gastritis can definitely feed off of one another. foods you are eating could be contributing to both-how about dairy, spicy foods, caffeine? do you consume any of those? do you still have these sores after going gluten-free?

[jerseyangel]

Betty--I also was not one to get better in a matter of weeks. Although the D subsided rather quickly, I had other issues that came and went with almost no clue as to why. I began to do a bit better late in the fall, but in mid Dec. began to get reflux--strange because I was not bothered by it before. I am still dealing with it--I have a lot of upper ab. gas that pushes upwards and gives me pressure at the base of my throat. The Phazyme does help, but not for long. I try to only use it when it gets very uncomfortable. I feel full a lot and there's a lot of stomach gurgling, belching , and sometines nausea. It's been 9 months now, and the reflux and the fatigue continue to be issues, along with some additional food intolerances. Since I was sick for a long time, I think it will take a while longer for everything to resolve.

[ebrbetty]

Patti, you seem to be having most of the same symptoms as me. I get very frustrated and to be very honest, if I ate something I KNOW was "safe" and the pains, bloating, gas etc start I have ended up in bed crying my eyes out...I just can't figure it out sometimes!

I'm also very tired all the time, I am Hypothyroid, so that's part of it, but I NEED a nap everyday if I want to be able to even make us dinner.

I don't eat high fat, butter, mayo or spicy foods, I know those will just kill my belly. one of the weird things is gluten-free breads seem to get me going, soon after that awful grumbling starts and I know I'm in trouble. I had 2 slices of gluten-free/DF raisin bread yesterday..not good!

thanks for taking the time to share your experiences, I seem to keep coming across posts all over the net where ppl say "I went gluten-free and felt great in days" EEEERRRR..I don't wanna hear that!

I hope we all feel better very soon, summer is coming and I want to enjoy it

hugs, Betty

[jerseyangel]

Betty--I know what you mean about the gluten-free breads. I just don't eat any of them any more. I did figure out that tapioca flour, and to a lesser extent, rice flour give me cramping, pain, and D. Just doing away with those flours, and anything made with them (and rice milk, too) has helped. When I want a cookie, I do eat the Enjoy Life Gingerbread or Snickerdoodles. Those two are made with sorghum flour and have no dairy or eggs. I'm fine with them. Those are the only baked goods type of things I eat now. I really understand the feeling of trying to do everything right, only to have a formerly safe food 'turn' on me. I have found a potato-based milk-type beverage that I can tolerate called Vance's Dari Free.

[Guest BERNESES]

I am also another one that did not improve in weeks. I noticed a definite difference right away but then other things started to crop up- like depression, fatigue, nausea. I have figured out a few things- I don't do very well with soy and I try to keep lactose to a minimum. I also found that the further I got into the diet, the more sensitive I became to smaller amounts of gluten (like cross-contamination etc). I try to avoid processed foods that are made in facilities that also process gluten because I've had too many problems with them.

Hang in there- there are plenty of us on here that DID NOT get better in two weeks. I think Jenvan's nurse told her it takes about two years to heal. You're in good comapny!

[ebrbetty]

thanks again for your input..

Berneses, I too seem to improve the first week or so then it was downhill again, it seems the nono food list is growing. I'm finally taking a chance and eating something for the 1st time today, a banana, hoping it sits well...I have a hard time finding lunch foods, so I end up going without till super

Patti, Is Vance's only available to buy online? I was thinking of trying it. butter is a problem for me to, rice milk I'm not sure yet..as far as the breads go I was very surprised and disappointed they bothered me, the one that seems to sit the best are trader joe's french rolls, but I eat very little of them, gluten-free breads are heavy and the bean flours screw me up big time

take care and thanks for sharing!!

[covsooze]

Hi Betty

Just wanted to add that I feel like I'm in the same boat as you. I've been gluten-free since Jan 10 and was great the first couple of weeks, but things seem to have gone down hill from there. I've previously been diagnosed with IBS and have gerd symptoms - and these are playing up. I had IGg testing which showed that I'm intolerant to just about every veggie and fruit and I'm left wondering what to eat. It's just so confusing - sometimes I think I should be eliminating all the baddies, other times I just wonder if I gave my body more time being GFDF would it get better anyway. I'm feeling rubbish too and thinking about food all the time Sorry for monaing, just wanted to reassure you that you're not the only one!

Susie x

[jerseyangel]

Patti, Is Vance's only available to buy online? I was thinking of trying it.

Betty--I have not been able to find it in any stores here (southern NJ). When I placed my order last week, the woman checked her list and could not find any store that carried it here, either. She told me they are a small company and just depend on word of mouth. I copied some of their info. and brought it into my Whole Foods and to my small local health food store. The woman at the health store thought it looked great--now if they would only give it a try....until then, I will continue to have it sent--it truly is the only "milk" that agrees with me.

[key]

WHen I went gluten-free I hadn't had the blood tests. I too came back borderline positive for celiac and chose not to have the biopsy, because I didn't want to start eating wheat. I felt great for the first 4 months on the gluten-free diet. THen everything seemed to hit. STarted having heartburn horribly, C, stomach pains, nothing seemed to agree with me. I wasn't having any D though and I wasn't nauseated and my bone pain was gone, etc.

Just last week, I thought maybe it was just IBS and thought I would try some wheat. It wasn't good and all the bone pain, diarhea, nausea all came back. It will be a year since I have been basically gluten-free in May. I have been at my whits end, but just as recently as this week, I have found that my problem is caffeine too. I quit drinking any coffee, diet pepsi and tea and low and behold I don't have any IBS symptoms. Heartburn is gone, etc. I feel SO much better off of the caffeine.

SO, I know I have celiac, but caffeine also gives me IBS. I have been a pretty heavy diet pepsi drinker for about 16 years and just wonder if that stuff isn't good for you at all. It is not easy to give up caffeine. I am very much an addict and swear I will never start drinking it again, because I feel so much better off of it. My stomach is refreshingly happy!!! No heartburn, no nausea, no C, no D, no bloating, etc. I am also able to handle dairy now that I am not drinking the caffeine.

All the stories here sound SO much like me. I am hoping that I have found my "cure"! HOpe everyone here gets to feeling better soon.

I of course feel great and then woke up with a cough and fever! This year has been horrible. My immune system stinks. My goal for the rest of this year and the rest of my life is to get well and stay that way. I have had four respiratory infections since October. I have never been sick much in my life until the past few years. I have three boys under six and I swear I am sick more then they are. My mom goes around worrying about me and how skinny I am and how unhealthy I look. It is very frustrating, because I do eat. I just have felt so run down and I don't want to be this way. I am determined to get better for good.

THanks for listening to me vent!

Monica

[shellbean]

I haven't been officially diagnosed with celiac but I have been for acid reflux and IBS. All of my symptoms are identical to celiac even symptoms from childhood. I actually just started my gluten free diet today (yea!). I do know that caffine always brought on the IBS in me. Every time I would drink it (I was a big Dr. Pepper addict! LOL) I would have IBS flare up. I stopped drinking caffine and all carbonated drinks (any carbonated drinks caused me problems) and my IBS symptoms calmed down alot. I hope yours calms down too!

[gointribal]

tribal-

unfortunately i didn't feel better within a few weeks either. i actually got worse initially...including a new form of stomach aches i had never had that stuck with me for several months. i'd say it was several months before i started noticing slight improvement... i am just over a gluten-free now, i have definitely improved, but have some on-going long-term type symptoms still. eliminating dairy also helped--i might have improved a bit faster had i tried that earlier. my 'ibs' type symptoms are really gone, so for myself, i think i never had it. gerd and gastritis can definitely feed off of one another. foods you are eating could be contributing to both-how about dairy, spicy foods, caffeine? do you consume any of those? do you still have these sores after going gluten-free?

i don't have a problem with caffeine, I haven't been eating dairy because I thought that was the problem to begin with. Yes, my sores did go away after going gluten-free and they come back when i get gluten in my diet. The weird thing to is the fact that for most people with IBS salads and non cooked veggies bother them. They don't have any effect on me, whats up with that? I'm at a loss as to what foods I should eat and if I do try gluten made products how do i know its the gluten or just IBS? I wanted the EDG done but the dr wants to try this first, so far its not fun the matamucil is killing my gut.

[CMCM]

Betty--I have not been able to find it in any stores here (southern NJ). When I placed my order last week, the woman checked her list and could not find any store that carried it here, either. She told me they are a small company and just depend on word of mouth. I copied some of their info. and brought it into my Whole Foods and to my small local health food store. The woman at the health store thought it looked great--now if they would only give it a try....until then, I will continue to have it sent--it truly is the only "milk" that agrees with me.

How does it taste? I'm wondering how I'd do with it....I have some trouble with potatoes.

[jerseyangel]

How does it taste? I'm wondering how I'd do with it....I have some trouble with potatoes.

It has a nice consistancy--like reg. milk. The taste is good--but on the sweet side. I use it for hot cocoa, puddings, w/cereal those kinds of things. I don't use it for, say mashed potatoes. If you have trouble with potatoes, it could bother you because it is potato based. That's why I use it--I don't do well with rice or soy. Potatoes are one of the only starchy foods that I can handle.

[ebrbetty]

thanks Patti, I thought I would need to order online. what do you use in your mashed potato's for a milk substitute?

for those with gerd/ heartburn..I switched to Kava instant coffee, its 90% acid reduced. A regular cup of coffee would kill me!

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[jerseyangel]

Betty--I have been reserving some of the cooking water from the potatoes in a glass measuring cup. I then mash the potatoes with a hand mixer, adding enough cooking water and Smart Balance to make them the consistancy I want. I make sure I remember to salt the water at the beginning of cooking--we think it makes a difference as opposed to adding salt later.

[jenvan]

Betty--I have been reserving some of the cooking water from the potatoes in a glass measuring cup. I then mash the potatoes with a hand mixer, adding enough cooking water and Smart Balance to make them the consistancy I want. I make sure I remember to salt the water at the beginning of cooking--we think it makes a difference as opposed to adding salt later.

Yeah Patti! That's how I make my mashed potatoes too

[ebrbetty]

jeeze, why didn't I think of that I guess I keep thinking I need some form of milk to make them creamy..thanks!!

[penguin]

jeeze, why didn't I think of that I guess I keep thinking I need some form of milk to make them creamy..thanks!!

You can also use boullion or broth when you're boiling the potatoes and the extra flavor detracts from the fact they don't have milk creamyness.