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Malleable

Possible Celiac Disease..?

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Hello everyone. I found these forums and am hoping somebody can help me out. I'm a 17 year old female, and for the last two years or so, I've thought I had IBS. My GI doc told me to take Metamucil every day and if that didn't help to come back for more tests. It seemed to work wonderfully, and as long as I eliminated typical IBS triggers like alcohol, carbonation, red meat, spicy things, things high in fat, fried things, etc.. I was fine. I was able to control my symptoms pretty well and only had diarrhea once every month or two, usually caused by something I know I did wrong (eating too much fat, etc.)

The last few months, though, it seems to have gotten more out of hand. Things I used to be able to eat are giving me gas/pain/diarrhea. After I would have an IBS attack, I would eat pasta/bread/chicken for a few days and it would clear up and I would be fine for quite a while. That stopped working. I couldn't go more than a week without having an attack and feeling awful. And it just seems to be getting worse. About 3 weeks ago I came down with some sort of flu that was going around, and since then I haven't had a normal bowel movement or had a day where I've not felt sick. I'm having loose stool/diarrhea every two or three days, no matter what I eat. I feel weak and tired and have been going to bed at 7:30 or 8:00 every night and sleep for about 11 hours, which is kind of abnormal for me. I looked back over my food journal and noticed that I've been eating a lot of bagels lately, which usually make me feel better, but I'm wondering if that's not what's making me feel awful these last few weeks.

I have an appointment with a new gastroenterologist on the 7th of January, but it feels so far away. I've just felt SO awful these last two weeks that the thought of another week dealing with this before getting to see anybody puts me in tears. I have awful anxiety problems as it is, and to top it off, my mother is anything but sympathetic.. She found me curled up on the bathroom floor crying the other day, asked "What's your problem?" and just walked away when I told her I was fed up with feeling like crap all the time. I have eliminated a number of foods out of my diet because of the IBS, and she insists that I'm "choosing not to eat them" and am just a picky eater. She told me "You don't need to see a gastroenterologist; you need to see a psychologist because you have food issues." Um... what?

Anyway, I am just so fed up and not sure of anything right now. I cut gluten out of my diet yesterday and felt a bit better, albeit hungry because most of the things I'm used to eating contain gluten so I'm kind of at a loss for what to eat. I tried half of a bagel this morning and have been gassy and nauseous and had pain all morning. I don't know what to eat and the thought of having to find things to eat that won't make me sick for another week before seeing the doctor... Ugh. I'm sticking to bananas, rice chex, and chicken for right now, but I can't do that for a whole week. I have to go back to school next week and that terrifies me because I am already feeling miserable enough just sitting at home. I would love to go on a gluten free diet immediately to see if that would resolve my symptoms, but I know I should keep it in my diet until I am tested for Celiac.

I don't really know what I'm asking for here.. Does it sound like Celiac disease? Any advice on how to make it through the next week before I can see the doctor? Is it normal that I would suddenly develop an intolerance to gluten suddenly after having the flu even though I've never had any problems with it before?? I'm just so scared of dealing with the next few weeks, and even day-to-day life. I can't keep living like this because this is not living. :( Sorry for the long post, just needed to get it out.. Thanks.

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Yes, you really should keep up the gluten for the next week, painful as it is. It sounds like your mother is going to need a diagnosis to get on board with the program and not accuse you of having anorexia. And you do run the risk of screwing up your tests if you stop eating gluten or go gluten lite, because your body will reduce its output of antibodies, which are what create the problem and also what the blood tests measure. You should just stick it out as best you can. Lots of people on the forum have found some relief from taking Pepto Bismal - you could try that. As for your question about the flu, it seems that the development of fullblown celiac disease requires a triggering event - for some it is physical illness, for some it is stress, for some childbirth brings it on, so yes, flu could be a possible trigger in a susceptible person. And it is certainly possible that you are celiac - even the anxiety is a symptom of the disease.

Hang in there and good luck {{{hugs}}}


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Hang in there. I had a horrible bout of diarrhea that lasted over three months, and I ate pepto, immodium, and dramamine [for nausea...there's a daytime version, too, active ingredient is Meclizine, I think. It's supposed to make you less drowsy] like they were going out of style.

Those helped me function. I also ate yogurt and stuck to a BRAT diet [bananas, rice, applesauce, toast...which will help you gluten yourself until you get tested] with lots of clear liquids [gatorade, broth, sprite...regular, not diet for calories, etc.]. My brother is on a liquid diet and has nothing but Ensure, and I drank quite a bit of that, too. It's gluten free, though, so you'll have to get gluten somewhere else, and doesn't taste bad to me, but some people hate it].

I'm right where you're at, feeling awful and knowing what will help but having to wait until I can get tested. Not much fun, but I suspect you'll find LOTS of support on this board. I'm sorry your mom doesn't get it. That makes it extremely difficult. {{{hugs}}}

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Hang in there. I had a horrible bout of diarrhea that lasted over three months, and I ate pepto, immodium, and dramamine [for nausea...there's a daytime version, too, active ingredient is Meclizine, I think. It's supposed to make you less drowsy] like they were going out of style.

Those helped me function. I also ate yogurt and stuck to a BRAT diet [bananas, rice, applesauce, toast...which will help you gluten yourself until you get tested] with lots of clear liquids [gatorade, broth, sprite...regular, not diet for calories, etc.]. My brother is on a liquid diet and has nothing but Ensure, and I drank quite a bit of that, too. It's gluten free, though, so you'll have to get gluten somewhere else, and doesn't taste bad to me, but some people hate it].

I'm right where you're at, feeling awful and knowing what will help but having to wait until I can get tested. Not much fun, but I suspect you'll find LOTS of support on this board. I'm sorry your mom doesn't get it. That makes it extremely difficult. {{{hugs}}}

I think my wife is going through the same thing. Can someone please help - is what she has coeliac disease? here's a posting I did on wedMD that explains her situation:

Hi all,

I'm posting this for my wife. Both me and my wife are vegetarians (no seafood or fish). She is 29 and from India. She just moved to the US recently 6 months ago. for the last 5 months or so, she has not been able to digest her vegetables. I'm not talking the occasional inability to not digest corn or anything. I'm talking about basically vegetables passing out in her feces almost completely undigested. For the last 5 months or so, it would occur 2-3x a week. Now over the last month or so, it has been occurring over a daily basis. Weird thing is that she can digest carbs (pasta, rice etc) and proteins (chick peas, tofu, paneer) and certain types of vegetables (potatoes which are of course pretty much all carbs), but things like green peas, carrots, tomatoes, brocolli and cabbage all pass right through.

We saw a GI specialist and he said that the problem was that the flora in her gut was having a hard time getting used to the food here. We have had a colonoscopy and endoscopy since then (just 2 weeks back) and nothing abnormal was found (although we're still awaiting official results in a couple of weeks). The GI was very dismissive of the digestion issue and didnt want to seem to address it. This of course is a BIG deal for us, as the issue is getting worse. My wife used to be able to digest fruits w/o any probs, now even fruits like oranges are going out undigested.

A bit more history - my wife was very iron and vit D deficient and anemic. Her anemia has since been addressed through iron IV and her Hb is back up to normal, but no change in the non-digestion.

Her serum albumin is 4, total protein 7.2 g/dl and bilirubin 0.6 mg/dl (in her anemic state a couple of months ago), so all very much in normal range and indicative of no malabsorption.

We have been taking probiotic pills and probiotic yogurt for the last 5 days, but no change as of yet. We were told that the food could be passing through her fast, but then why only vegetables???

The one thing I can think of is that she is having some kind of enzyme deficiency and I suppose the next thing to try would be the OTC digestive enzyme supplements (from GNC for ex). When I mentioned this to another GI, she was not much in favor of the idea. To me it seems the logical next step, no?

Someone PLEASE help us in figuring out what is going on!!! It really freaks my wife out to see veggies go out undigested - she's starting to not want to eat, stating "what's the point". I should mention that pureed veggies or veggie juice (carrot for ex) is ok - so it is some mechanical breakdown that is the issue.

Our GIs are being completely dismissive and useless and dont think its a serious problem, but for vegetarians like us, it IS a serious problem and has a significant effect on my wife's psyche and mood.

Please help us figure out what is going on!!!!

I read that oats could trigger gluten intolerance. but she practically lived on oats when in India! so is it possible that the oats (quaker all natural oats) could trigger gluten intolerance now after she's come to this country????? or the wheat/barley/rye that she's been eating ever since she's been here - heck we eat rotis/chappatis/naan (indian breads) on a daily basis. the oats however, she only started eating a couple of months after coming here and that's kinda when some of these issues started cropping up - could the american oats have triggered the gluten intolerance????

PLEASE HELP!!!

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Thanks to everyone who replied. :) I stopped eating the bagels for a couple of days as those seemed to make me the most sick, and I do feel a bit better. But I do still get really gassy/nauseous/etc after eating other things with gluten.. I guess we will see what the doctor says. It's only a week away now, and I'm hoping that since I was able to make it through the last week, I will be able to make it through this one, too.

Part of me really hopes that it is some sort of gluten intolerance as that is pretty easily solved by cutting it out of my diet and would maybe mean that after being gluten-free for a while, I could introduce foods back into my diet that I wasn't able to eat while thinking it was IBS. The other part of me hopes it isn't because that sounds awful trying to stick to a gluten-free diet, especially since in the past most of my staple meals/snacks have been based around pasta/bread/pretzels... I guess we will see what happens.

I will definitely request that I be tested for Celiac disease while at the doctor, but I was looking over the results of my last blood tests and am not sure how to interpret them. The one part that looked like it might be helpful was "IgE+Allergens" and it listed some specific things that came out as "abnormal" including wheat and milk.. I already avoid milk like the plague, but perhaps this is an indicator of a problem with wheat as I am suspecting. It appears to be a minor allergy, but these blood tests were taken before I came down with the flu and really started to noticed huge problems after eating bagels and such, so it will be interesting to see how the tests come out this time. They may be different tests, even... I don't know. Just thought that was interesting.

Anyhow, sorry for rambling, but this forum seems to be a great place for information and to get things off of my mind when no one in my family seems to understand or care. I am supposed to take a trip to Vegas with my mother the week after my doctor's appointment, but I suspect that I will still be feeling ill and will not have a great time at all. Just trying to figure out how to tell her that I'd like to postpone it so that I can enjoy it fully instead of being worried about getting sick because I don't know what's making me sick... But with her previous reactions to anything I've said about being sick, I don't think that's going to go over very well. :( I guess ultimately my health comes first, no matter what her reactions, but it's very difficult to deal with her sometimes, especially when I don't feel well. *deep breath*

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The IgE blood tests are for allergic reactions to substances, whereas the body's reaction to gluten is an autoimmune reaction, so it is possible to not react to wheat as an allergen by to have an autoimmune reaction to it. The full celiac panel to test for the autoimmune reaction consists of the following tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Petptde (DGP)

Total Serum IgA

It is important to run them all because you can be positive on some and negative on others; and, if your total serum IgA is low that will invalidate some of the tests automatically, meaning that you are a low antibody producer. I don't know if Medlab can run all the celiac tests - so far as I know they are not listed on the standard lab form and sometimes the doctors are not familiar with them all, so take this list to your doctor and have him find out where the tests can be processed if there is a problem.

By the way, problems digesting milk are common in those with gluten intolerance/celiac, because the disease destroys the part of your small intestine that produces the enzyme lactase that digests the milk sugar (lactose). Usually, once the gut heals you can go back to drinking milk (and eating ice cream :D ).


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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In reply to Hobokenworkingman, yes, gluten sensitivity or celiac is a possibility. As you know, American society eats a LOT of gluten--the foods are full of it! The oats you describe are not certified as gluten free, so, yes, they may have contributed to a sensitivity to gluten. Because oats are harvested on the same equipment as other grains here in the U.S., they tend to be highly contaminated with gluten unless they're certified to be gluten free. Health food stores carry gluten-free oats, so if you wife prefers oats, she can try those. However, many people with actual celiac disease cannot tolerate oats at all (I'm one of them).

The iron and Vitamin D deficiencies are indeed symptoms of celiac disease. With regard to the endoscopy findings, if she only recently developed symptoms, it's possible that not enough damage has yet occurred to the lining of her small intestine. Also, at least one celiac expert believes that endoscopies to confirm celiac are unnecessary because the scope oftentimes is not long enough to reach the damaged section, the surgeon is oftentimes not skilled enough in biopsying for celiac disease, or the pathologist is not knowledgeable enough to detect damage to the villi. Instead, if a person has symptoms of celiac and the symptoms resolve on a gluten-free diet, that is adequate to confirm that gluten should never be eaten--it doesn't matter if it's celiac or gluten sensitivity.

Of course, there is the possibility that your wife's original digestive problems contributed to a "leaky gut," which has now made her sensitive to gluten. Be aware that this is can sometimes cause depression and other neurological symptoms. In the meantime, my advice is for her to stop eating ALL foods that she has difficulty digesting (including the vegetables and fruits that pass through her system undigested), add a gluten-free yogurt to her diet (one that doesn't have sweeteners in it), remove all gluten, dairy, corn, and soy from her diet (temporarily...and then add back in one by one), and have her take L-Glutamine, which heals the gut. There is also the possibility that your wife is sensitive to either sorbitol or fructose.

I sincerely hope your wife's condition improves.

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In reply to Hobokenworkingman, yes, gluten sensitivity or celiac is a possibility. As you know, American society eats a LOT of gluten--the foods are full of it! The oats you describe are not certified as gluten free, so, yes, they may have contributed to a sensitivity to gluten. Because oats are harvested on the same equipment as other grains here in the U.S., they tend to be highly contaminated with gluten unless they're certified to be gluten free. Health food stores carry gluten-free oats, so if you wife prefers oats, she can try those. However, many people with actual celiac disease cannot tolerate oats at all (I'm one of them).

The iron and Vitamin D deficiencies are indeed symptoms of celiac disease. With regard to the endoscopy findings, if she only recently developed symptoms, it's possible that not enough damage has yet occurred to the lining of her small intestine. Also, at least one celiac expert believes that endoscopies to confirm celiac are unnecessary because the scope oftentimes is not long enough to reach the damaged section, the surgeon is oftentimes not skilled enough in biopsying for celiac disease, or the pathologist is not knowledgeable enough to detect damage to the villi. Instead, if a person has symptoms of celiac and the symptoms resolve on a gluten-free diet, that is adequate to confirm that gluten should never be eaten--it doesn't matter if it's celiac or gluten sensitivity.

Of course, there is the possibility that your wife's original digestive problems contributed to a "leaky gut," which has now made her sensitive to gluten. Be aware that this is can sometimes cause depression and other neurological symptoms. In the meantime, my advice is for her to stop eating ALL foods that she has difficulty digesting (including the vegetables and fruits that pass through her system undigested), add a gluten-free yogurt to her diet (one that doesn't have sweeteners in it), remove all gluten, dairy, corn, and soy from her diet (temporarily...and then add back in one by one), and have her take L-Glutamine, which heals the gut. There is also the possibility that your wife is sensitive to either sorbitol or fructose.

I sincerely hope your wife's condition improves.

Thank you very much. We stopped all gluten free foods as of 2 days ago and my wife says that the irritation feeling she used to get in her tummy has now stopped. She still is going to the bathroom a lot and gets tummy pains for which she is taking pepto, which seems to help her a bit. We will be going on thursday to see the GI for the official endoscopy/colonoscopy results. I do hope this is the reason. There definitely is depression - heck I would be depressed too to see foods that I've eaten for years to suddenly start passing right thru you. to top that off, she's also in b/w jobs right now and doesnt have that to occupy her mind. so its a lot of time then spent just thinking about one's plight. but after we discussed the gluten possibility, she did start feeling better and started thinking back to all the tummy issues she's had for the last 8 yrs or so (when she really started eating wheaty foods on a regular basis), and it all started making sense to her...

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