Possible Intolerance But Not Celiac?

[Angelica]

So here's my story.

For years I have been told that I have IBS- lots of stomach pain, cramping, diarrhea, you know the drill. We figured out that I was lactose intolerant when I was a kid so I haven't had milk products in years. My IBS symptoms were so bad that in grad school the joke was that I lived on miso soup and green tea. In more recent years my IBS has calmed down a bit but it flares every once in a while (usually once a month.) My stomach was at one point so bad I used to be fearful to leave the house, but these days I truck along okay.

Doctors have been so annoyed with my stomach that for the last few years I never mentioned IBS when I went into the doctor for something else. No matter how bad the stomach pain, I never went in- just toughed it out because I knew they would tell me that I was just anxious, or depressed, or imagining things. So for years I have managed, and trudged through it all. I am also a highly allergic person, in that I have a serious reaction to bee stings (almost died-- that was no fun) certain pollens, and have eczema in the spring.

So last year I moved to a new job in a new part of the country and got a new doctor. Did not tell her about the IBS, because really-- why bother? Anyway over the summer I was sidelined by severe fatigue- I mean the kind of fatigue that is so bad that you can't put away the groceries after bringing them in the house. Then I started experiencing numbness in my hands and feet and significant twitching (like a hand doing wacky and noticeable things, not a small twitch.) I also had reocurring vertigo (diagnosed as Benign positional, but it still sucked.) So I trucked to over the doctor. She was mystified but tested a ton of things such as thyroid, bloodwork, etc, etc. Finally, just as the symptoms were getting severe and she started ordering major neuro tests she checked my vitamins. Severe (as in so off the charts how I didn't have pernicious anemia she doesn't know) B-12 deficiency, also a bad vitamin D deficiency. They started giving me shots and the weird symptoms eased although the fatigue remained (it just wasn't as crippling.)

Then I told her about the IBS and she put two and two together and decided to test me for celiac since it seemed reasonable given the vitamin B-12 problem. The test came back affirmatively negative. She encouraged me to get an endoscopy and colonoscopy to rule out Crone's but after I visited the GI doc and discovered that it would cost me $900 (that I don't have) even with my insurance, I put it off. The GI doc thought I didn't have any real problems to look for, btw- he wrote me off as lactose intolerant. This was all in November.

So early in January I had what appeared to be a gallbladder attack. It fit the symptoms perfectly, and it was horrifying. So I changed my diet to low-fat and was pretty strict about it. For two months I felt better with just some regular, intermittent IBS symptoms (so much a part of life now that I don't notice them.) Then beginning in March I started having pain around my gallbladder, gas, bloating, belching and a severe onset of IBS symptoms again. Despite trying to stick to the diet things did not get better. Then last week I had what seemed to be another gallbladder attack and I went straight back to the doctor. They thought it was the gallbladder because it seemed pretty clear-cut and everyone in my family has had their gallbladder out. She ordered an ultrasound and a bunch of tests and I had them. Then I went in on Thursday (still feeling sick and nauseous) and she said "well there's nothing wrong with you." So the tests came back with no stones, nothing elevated in the blood work- nothing. I get the sense that she thinks that I am a bit crazy because I was like "but it hurts." and she said "There is nothing wrong with you."

My best friend has Celiac, and she is also a doctor ( a pediatrician.) I told her all this and she said "you may be gluten intolerant." She has pressed this for years but today is the first time I really heard her. Could it be? The symptoms would certainly fit and boy am I tired of being sick and tired. I talked with her about it got a bunch of advice and books to read about it and am now trying to absorb it. Should I go forward and go gluten-free without a diagnosis? At this point I have exhausted the doctor and am already behind on medical bills so more tests are really out of the question.... I cook for myself all the time and adjusting to gluten-free, while hard won't be as hard for me as some (I already almost never eat out. Don't eat fast food, and I live alone, so I don't have to worry about a spouse who might question me.) If I do this, how long should I go for to see if it works? Any other advice? I am just tired of always being sick, but i also fear being labeled as a head case and I think my doctor and some of my colleagues may already be fixing that label on me...

[mushroom]

It certainly sounds to me like you are very gluten intolerant, and if the tests for celiac are negative, then that would make you non-celiac gluten intolerant as your pediatrician friend says. Here are some links to supplement your reading:

https://www.celiac.com/articles/22491/1/Study-Shows-Gluten-Sensitivity-and-Celiac-Disease-Clinically-Different/Page1.html

Open Original Shared Link

http://online.wsj.co...eTabs%3Darticle

Yes, if I were you, I would go gluten free today. You will see from my sig. block that I am self-diagnosed after going through a lot of what you did so in the end you don't even mention it any more because your are considered to be a headcase if you do.I had to develop rheumatoid arthritis in my 60's before I finally woke up Thank goodness for your friend. You do not need a diagnosis, a doctor's prescription, or permission to go gluten free. That's the beauty of it. They can't make you suffer any longer. You just blow them off, pffft, and do it yourself.

There is lots of information on this site, not just on the forum but at celiac.com to get you started. Come back and fire away with any questions you have because there are lots of good folk here who will be happy to help.

[costellosfriend]

Should I go forward and go gluten-free without a diagnosis? ... I am just tired of always being sick, but i also fear being labeled as a head case and I think my doctor and some of my colleagues may already be fixing that label on me...

Go ahead and try the diet. It can't hurt, and it might help.

I'm sorry you feel like your doctor thinks you're a head case. This is precisely the reason I don't go to doctors with vague symptoms anymore. For a while I kept going to doctors saying I was exhausted. They'd run a few tests and say I was fine. Then they'd suggest an antidepressant.

Personally if I were you and the diet helped me, I wouldn't even go back to the doctor and tell her. She'd still think you were a head case.

Good luck!

[Angelica]

Okay so I woke up this morning and decided to give gluten-free a go- I mean, as the other poster said, I have little to lose.

So I went through my pantry- I keep a well-stocked pantry btw-- and moved everything with gluten out of the main pantry-- the unopened boxes of pasta, crackers, etc went into cupboards over the fridge (if this works I will haul them down and take them to a food bank. Its good food as I already only ate whole-grain and organic). I moved the gluten containing soups and cereals and stuff down to a lower portion of my pantry. The empty spaces I cleaned thoroughly. I have plenty of rice and beans, nuts and popcorn, so I left that, especially since it lived on a separate shelf from the pasta.

Then I went to my baking pantry. I am a huge baker-- actually really renowned for that among my friends and when I opened it to see all the flours, sugars, and specialty baking stuff I almost cried. I decided just to leave that alone (since it is separate from the other pantry) and face it if/when the gluten-free thing works. Then I went to the store- I have plenty of veggies, fruits and lean meats on hand, but I bought some rice pasta,gluten-free corn tortillas, gluten-free oats (I know oats are controversial but I bought the Bob's Red Mill Gluten Free ones. I love oatmeal, I eat it every day and it is often something I eat when I can eat nothing else, so I'm going to try keeping the oats) and some gluten-free bread mix (going to try my hand at baking something gluten-free.) I also bought some corn snacks, and these gluten-free lemon meringue cookies to staunch the munchies.

So the kitchen is re-arraigned. I scoured my KitchenAid mixer (I have a professional one that I use for baking) and my baking pans. Those were easy because they are metal. I figure that if I take up gluten-free baking I will have to get a new baking stone because it isn't so easily cleaned. I also bleached my cutting boards and gave them a good scrubbing (they are plastic.) I know that I need to a get a new inexpensive toaster, but that will have to wait (no toast for now!) As it turns out, my dog's food is gluten-free (its a premium food- she has allergies- lol, my dog went gluten-free before I did!) I have requested a bunch of books from the library-- so does anyone have favorite must-read books to recommend? (I am a historian by trade, with a PhD- so it suffices to say that I research everything because I am hard-wired to.)

I will also write down everything I eat. Any other advice?

[koolkat222]

You should definitely try going gluten-free. You just might the answer to your problems, and there's nothing to lose. I started to feel better in just a few days. Of course, it took my body much longer to heal, but I did feel better.

Good luck to you

[staci002]

So here's my story.

For years I have been told that I have IBS- lots of stomach pain, cramping, diarrhea, you know the drill. We figured out that I was lactose intolerant when I was a kid so I haven't had milk products in years. My IBS symptoms were so bad that in grad school the joke was that I lived on miso soup and green tea. In more recent years my IBS has calmed down a bit but it flares every once in a while (usually once a month.) My stomach was at one point so bad I used to be fearful to leave the house, but these days I truck along okay.

Doctors have been so annoyed with my stomach that for the last few years I never mentioned IBS when I went into the doctor for something else. No matter how bad the stomach pain, I never went in- just toughed it out because I knew they would tell me that I was just anxious, or depressed, or imagining things. So for years I have managed, and trudged through it all. I am also a highly allergic person, in that I have a serious reaction to bee stings (almost died-- that was no fun) certain pollens, and have eczema in the spring.

So last year I moved to a new job in a new part of the country and got a new doctor. Did not tell her about the IBS, because really-- why bother? Anyway over the summer I was sidelined by severe fatigue- I mean the kind of fatigue that is so bad that you can't put away the groceries after bringing them in the house. Then I started experiencing numbness in my hands and feet and significant twitching (like a hand doing wacky and noticeable things, not a small twitch.) I also had reocurring vertigo (diagnosed as Benign positional, but it still sucked.) So I trucked to over the doctor. She was mystified but tested a ton of things such as thyroid, bloodwork, etc, etc. Finally, just as the symptoms were getting severe and she started ordering major neuro tests she checked my vitamins. Severe (as in so off the charts how I didn't have pernicious anemia she doesn't know) B-12 deficiency, also a bad vitamin D deficiency. They started giving me shots and the weird symptoms eased although the fatigue remained (it just wasn't as crippling.)

Then I told her about the IBS and she put two and two together and decided to test me for celiac since it seemed reasonable given the vitamin B-12 problem. The test came back affirmatively negative. She encouraged me to get an endoscopy and colonoscopy to rule out Crone's but after I visited the GI doc and discovered that it would cost me $900 (that I don't have) even with my insurance, I put it off. The GI doc thought I didn't have any real problems to look for, btw- he wrote me off as lactose intolerant. This was all in November.

So early in January I had what appeared to be a gallbladder attack. It fit the symptoms perfectly, and it was horrifying. So I changed my diet to low-fat and was pretty strict about it. For two months I felt better with just some regular, intermittent IBS symptoms (so much a part of life now that I don't notice them.) Then beginning in March I started having pain around my gallbladder, gas, bloating, belching and a severe onset of IBS symptoms again. Despite trying to stick to the diet things did not get better. Then last week I had what seemed to be another gallbladder attack and I went straight back to the doctor. They thought it was the gallbladder because it seemed pretty clear-cut and everyone in my family has had their gallbladder out. She ordered an ultrasound and a bunch of tests and I had them. Then I went in on Thursday (still feeling sick and nauseous) and she said "well there's nothing wrong with you." So the tests came back with no stones, nothing elevated in the blood work- nothing. I get the sense that she thinks that I am a bit crazy because I was like "but it hurts." and she said "There is nothing wrong with you."

My best friend has Celiac, and she is also a doctor ( a pediatrician.) I told her all this and she said "you may be gluten intolerant." She has pressed this for years but today is the first time I really heard her. Could it be? The symptoms would certainly fit and boy am I tired of being sick and tired. I talked with her about it got a bunch of advice and books to read about it and am now trying to absorb it. Should I go forward and go gluten-free without a diagnosis? At this point I have exhausted the doctor and am already behind on medical bills so more tests are really out of the question.... I cook for myself all the time and adjusting to gluten-free, while hard won't be as hard for me as some (I already almost never eat out. Don't eat fast food, and I live alone, so I don't have to worry about a spouse who might question me.) If I do this, how long should I go for to see if it works? Any other advice? I am just tired of always being sick, but i also fear being labeled as a head case and I think my doctor and some of my colleagues may already be fixing that label on me...

I am so thrilled that I came upon your post! I have been having a lot of the same issues as you have and have been wondering myself if I should go ahead and try a gluten free diet. After reading your post, I too have decided to go gluten free. I'm sure it will be difficult to get used to and I know that gluten is hidden in a lot of things. My biggest problem will be bread and pasta, 2 of my favorites! I wish you the best of luck! Thanks for posting!

[Igg postive]

So here's my story.

So early in January I had what appeared to be a gallbladder attack. It fit the symptoms perfectly, and it was horrifying. So I changed my diet to low-fat and was pretty strict about it. For two months I felt better with just some regular, intermittent IBS symptoms (so much a part of life now that I don't notice them.) Then beginning in March I started having pain around my gallbladder, gas, bloating, belching and a severe onset of IBS symptoms again. Despite trying to stick to the diet things did not get better. Then last week I had what seemed to be another gallbladder attack and I went straight back to the doctor. They thought it was the gallbladder because it seemed pretty clear-cut and everyone in my family has had their gallbladder out. She ordered an ultrasound and a bunch of tests and I had them. Then I went in on Thursday (still feeling sick and nauseous) and she said "well there's nothing wrong with you." So the tests came back with no stones, nothing elevated in the blood work- nothing. I get the sense that she thinks that I am a bit crazy because I was like "but it hurts." and she said "There is nothing wrong with you."

Did they give you a gallbladder HIDA test? This test measures the functioning of your gallbladder. You can have a negative ultra sound and no gallstones and have a low functioning gallbladder which can cause a lot of pain. I had to ask my doctor for the test when all my other tests came back negative. But I wouldn't give up the idea of looking into celiac disease and gluten intolerance too.

[goodnews]

Did they give you a gallbladder HIDA test? This test measures the functioning of your gallbladder. You can have a negative ultra sound and no gallstones and have a low functioning gallbladder which can cause a lot of pain. I had to ask my doctor for the test when all my other tests came back negative. But I wouldn't give up the idea of looking into celiac disease and gluten intolerance too.

I was wondering about whether she had the HIDA scan too. My gallbladder ultrasound came back normal with no stones...only after they did the HIDA scan with the CCK did they notice how poorly the gallbladder was functioning (functioning at 23%). It surprised me at the time because while I was having pain I really thought it was celiac or gluten related..Of course now they think it's that too so we will see. Anyhow, I suggest getting the HIDA scan done. Good luck on your gluten free journey. I am excited to try it this week after my next endoscopy.

[Angelica]

They did not do the HIDA scan-- the doctor was adamant that nothing is wrong. She said that they would only do more tests if the problems "escalated" and seemed mildly annoyed. So I didn't press the issue (I had known about the HIDA-- my secretary had one when she had stomach pain.) Given that they don't seem to want to deal with me, I am not going to deal with them for the moment (unless the pain strikes again and is super bad. Then I will go in and demand a HIDA.) the fact is that I had malabsorption of B-12 and chronic intestinal problems before this new bout of "gallbladder" pain.

What I found weird is that when they did the ultrasound it hurt way more when he was pressing on my central stomach area compared to when he was pressing on my gallbladder area. Which did not hurt at all... but the center of my stomach HURT. Anyway I am eating now, and feeling okay.I think I will just stay gluten-free and low-fat for now-- because I have lost 18 pounds since December, and I feel a lot better on that front. (I wasn't really heavy, but getting chubs. Now I am getting back to normal and a few more pounds and I'll be sleek, lol.)

I am on gluten-free day # 2 and all is well, I am just super hungry- I think I am going to have to adjust to eating more small meals because the bigger meals are not tiding me over. Tonight I have a student event to go to at a local restaurant as a faculty advisor-- I think for this time I am going to eat ahead of time and not eat while there....

[Igg postive]

[What I found weird is that when they did the ultrasound it hurt way more when he was pressing on my central stomach area compared to when he was pressing on my gallbladder area. Which did not hurt at all... but the center of my stomach HURT. Anyway I am eating now, and feeling okay.I think I will just stay gluten-free and low-fat for now-- because I have lost 18 pounds since December, and I feel a lot better on that front. (I wasn't really heavy, but getting chubs. Now I am getting back to normal and a few more pounds and I'll be sleek, lol.)

[Igg postive]

I was wondering about whether she had the HIDA scan too. My gallbladder ultrasound came back normal with no stones...only after they did the HIDA scan with the CCK did they notice how poorly the gallbladder was functioning (functioning at 23%). It surprised me at the time because while I was having pain I really thought it was celiac or gluten related..Of course now they think it's that too so we will see. Anyhow, I suggest getting the HIDA scan done. Good luck on your gluten free journey. I am excited to try it this week after my next endoscopy.

Goodnews,- I had my gallbladder out several years ago. I would tell the doctor about the pain (it happened infrequent then) and he would pass it off as bad food. So after that I just felt I had eaten bad food. Then the frequency became more and more. I wouldn

[sb2178]

I'd avoid the oats for at least the first month. Even though they are gluten-free. I still reacted to them after 6 months, but can eat them occasionally now.

[Angelica]

Thank you all for your advice.

I have spent a lot of money on dental work (totally unrelated, but thousands) in the last three months, so I am desperately trying to avoid the doctor at the moment. The bills are threatening to sink me, so I won't be pursuing any more tests unless the pain comes back. At the moment there is no pain, and I am trucking along okay.

I just don't feel the need to "know" medically. I have had so much trouble with doctors over the years that if this works, then it works. If it doesn't then I go back, but I really hope it works. Being gluten-free is a small price to pay to no longer constantly be sick.

But thanks for your help. Certainly if I get another "gallbladder attack" feeling I will go in and demand a HIDA but frankly I really hope it isn't. I can't afford surgery right now (even with insurance it would cost thousands and with my student loan debt I have no wiggle room.) So I just am crossing my fingers and hoping to stay healthy.

[jelina]

I am just tired of always being sick, but i also fear being labeled as a head case and I think my doctor and some of my colleagues may already be fixing that label on me...

Your story is frighteningly similar to mine: the gastro symptoms, the unimaginable fatigue, numbness, dizziness, you name it. I always had IBS and I always struggled with dizziness and fatigue. But it was not until about a year and a half ago that I became so sick that I started losing a great deal of weight on top of it all. Then the doctors started paying attention, did all the obvious tests (and I tested negative for celiacs), and finally decided to diagnose me with anorexia and send me to psychiatrists. (Trust me, that was a ridiculous diagnosis.)

I took a stool and saliva test on the side, and (among other things) the test showed that I had Secretory IGa reactions to soy, casein, and a mild reaction to gluten. I didn't trust the test and wanted to stick with mainstream medicine, so I ignored it. But after trying EVERYTHING else (literally), I finally decided to cut out soy, gluten, and casein.

I doubt it was placebo because I wasn't very hopeful at all that it would make a difference, but I finally started feeling better! I had forgotten what it was like not to have this cloud in your head 24/7. I'm back in school and, although I still struggle with certain symptoms, I can now actually function.

So that was a long way of just saying that people without celiacs or classic allergies can have serious, debilitating food intolerances. I'm glad you're trying this! I might try incorporating soy again to see if it is just gluten, or vice versa, but for now, I'm so happy to not feel sick anymore, that I prefer living like this.

[ruca55]

I also was going to recommend you request the hida scan. I had no stones that showed up on an ultra sound and only one gallbladder attack. My ejection fraction was only 9%. While th removal helped with a lot of the symptoms, I am here because I also believe it's all related to celiac. Actually had my endo today and they found gastritis in my stomach, which I also believe may be related. I'm not holding a lot of hope in the test results, I will be going gluten free regardless of what the biopsy show.