Celiac disease w/ibs symptoms
#247526 - 02/20/06 08:40 PM
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I recently had got my blood tested for celiac disease and i had 50 positive antibodies in my blood, thats when my pcp told me to follow a strict gluten-free diet. which i have followed to a T. last night i had the worst IBS attack ever (which i haven't had much pain since i've been GF)all of the same IBS symptoms came back, i was bent over in a spasmodic cramping on the toilet for almost an hour. i don't understand, now i'm thinking i might still have ibs also. i'm confused and in much pain, i wish someone could help me, but noone has yet, professionally that is.
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Nothing, absolutely nothing, happens in God's world by mistake.
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There are quite a few of us who have tested positive for gluten antibodies but negative for celiac disease. There are mixed feelings on whether we should or should not be sticking to a GF diet. Some of the people on here eat GF and others, who have found no relief from eating GF, have gone back to it, despite the antibodies.
Doctors have different opinions on this. I've gotten advice from 4 doctors. 2 tell me to eat gluten if I want, one said I must adhere to a GF diet, and one told me to do whatever I felt comfortable with. 
I was on a GF diet for over a year, and felt no better. Just went from D to C...but still pain, spasms, gas, bloat...
I'm afraid to eat wheat though. Because I fear that I have Gluten Intolerance plus IBS and maybe I just can't get the IBS solved and that I should still eat GF, even though I don't feel better on it, while I continue to work on the IBS. But, the doctor I see now wants me to eat gluten again because he thinks there are no absolute answers with these blood tests. One doctor I spoke with on the phone told me she won't even use the blood tests anymore because they don't do anything but confuse people. Well, I'm confused, that's for sure!
You can definitely have both gluten intolerance and IBS. You did say you had less pain with a GF diet...so maybe you are better off sticking with it and accepting the fact that you will still need to watch other foods because of your IBS.
You can't be definitively diagnosed with celiac unless you have an endoscopy...and you can't have one of those without eating gluten again for a while, for the test to be accurate.
What are your thoughts? Have you gotten the opinion of a GI doc? Do you trust your doctors advice to abstain from eating gluten based on blood tests? How are you feeling today?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi, I went thru some celiac testing some time ago and my advise would be to have the biopsy done to confirm celiac disease. My blood was positive, however, the biopsy was negative and that is the true test. They can see the damage in the small intestine. If you really have it, it's really important to go gluten free, but not if you really don't. Diane
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IBS C, Spasms
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You also tested positive for gluten antibodies, but your doctor told you it was okay to eat gluten? Have you ever gotten a second opinion?
Have you ever tried eating GF? Do you honestly not worry that eating gluten is affecting us in a negative way? You eat gluten containing cereals and breads and pasta without concern?
Thanks for your thoughts on this! 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Well, I did have a couple opinions, and they basically said that I didn't have celiac disease, and could eat gluten. I did actually go Gluten free for quite a while to see how I'd be. I must say my IBS, was no better. Everyone one's different, but that's just how it went for me.
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IBS C, Spasms
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So, you eat gluten containing breads and cereals without worry or restricting the amount?
I think I'm like you...I don't think the GF diet helps much. But I'm afraid if I eat gluten, I'll never have a chance of feeling better.
Thanks
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Augie,
I know I talked to you about my gluten issues before. I did the gene test, which came back negative. My GI diagnosed IBS, and I've just been working on my SF intake since then. I keep saying I am going to go back to eating wheat...but i still haven't! I guess I'm afraid too. Plus, I've become so accustomed to my GF products that I don't even want to go back. I am going to try it at some point though, just so I can see if it really does affect me negatively or not. You are definitely not alone in your gluten confusion!
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Kim
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I pulled out my blood test and the one I was positive for, the reason for the biopsy, was the anti tissue transglutaminase, Ttg. A test that they do now for "almost" confirming celiac along with the Antibody one. I was negative on the IgA and IgG andibodies ones. If you're positive on those, without having celiac, then maybe it's best not to eat it if it doesn't make you feel good. You're probably doing the right thing for your body.
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IBS C, Spasms
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...but, I'm still unsure if you are freely eating gluten products without worry now. Breads, cereals....any amount you want without questioning it?
I would have thought the complete opposite with the antibody tests. I tested positive for the IgA and the IgG, but negative for the Ttg. So, I if I had tested positive for the Ttg, that would have been a stronger case to eat GF. Why do you think the opposite?
Oy, I don't feel good eating GF...but that could be the IBS. I'm just driving myself (and probably you guys) crazy with this GF uncertainty.  
How are those apples going? 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi Beth. The apples are going good! I do eat gluten, wheat products freely. As a matter of fact, I felt the best when I ate no meat, chicken etc. for almost a year, and lived on salad, and pasta, and shredded wheat and bananas. I remember I had no constipation. For me, I have the most trouble with fats, and with protein. My doc made me start eating turkey and chicken again. You're not driving me or anyone else crazy I don't think, so don't worry about it. Do what makes you feel better. I think the positive IGg, and IGa's is more of a reason not to eat gluten IF it makes you feel bad. So, no, I don't think the opposite. I just know that there is a difference between celiac disease and gluten intolerance. The Ttg I understand has something to do with damage to the intestine, nothing with intolerance. Though it's not a guarantee for celiac, as I proved that with the biopsy. I read somewhere a correlation between positive Ttg's and people with IBS. That would explain my situation. I didn't know then that I had IBS. Ok, enough rambling for now.
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IBS C, Spasms
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Hello everyone. I'm just going to put my families personal experience in here. My husband was diagnosed with Celiac in December of 04 as a result of his mother also being diagnosed. So immediately he went on a gluten free diet. He felt great for a few months. Then started feeling crummy again. Knowing what I know about Celiacs(that most don't tolerate Dairy b/c the gluten protein and dairy protein are very similar and so cause a similar reaction), I told him he should try also excluding dairy. After only a few days he was feeling good again. Problem solved. Not really. Again he did fine for a few months and then started back with the symptoms though he had changed nothing. He also started getting large lumps under the skin in his underarms. So we decided to get a referal to an allergist and a dermatologist. We got it and I went on our insurers web page to see what doctors to call and I found one doctor who was both and allergist and a dermatologist. I thought it would be a great idea to go to him so as to not get a conflicting report. So we went to him, and he has been amazing. We found out through allergy skin testing as well as an exclusion diet that he is also intolerant to corn which he was eating constantly since the CD diagnosis as well as about 10-15 other things. He had an extreme reaction on day with carrots. So he started testing everything that he had reacted negatively from the skin testing. It was right. He had bad reactions with most of the things that he did with the skin testing. The good thing about all of this is that he can avoid the things that cause him problems. So if you do have a positive test with CD, my advice is to stick to a gluten free diet and to get further food allergy/intolerance testing. You could decide that you don't have CD because you aren't feeling better, but it may be that there are other issues there. The other thing that I wanted to say is that a biopsy can in my opinion be inaccurate because some people aren't born with CD. You may have the gene for it but everyone starts experiencing symptoms at different times in their lives. It can lay dormant and come out in your fifties or you can suffer with it from child hood and not connect all the symptoms. I definately suggest to anyone with IBS to get tested and even if the blood test is negative to start a gluten free diet and keep a food record of everything you eat and how you feel within a half hour of eat and also any syptoms you have that you would normally consider your IBS. IBS is just a title to the symptoms and does NOT an answer to your problem. Most MD's will not tell you this because it does not put any money in their pocket. They will try to mask the symptoms and not get to the root of the problem. Don't just accept the diagnosis of IBS. My husband grandmother has suffered for years with IBS, Fibromyalgia, and Chronic Fatigue Sydrome. Again, these are all a diagnosis of the symptoms and not the problem. She's so old now and set in her ways, will not be tested for CD, but I know she has it. My point in mentioning her is that you don't have to suffer your whole life like she did. I also want to mention that Cancer is a huge problem for people with CD. Get tested and know what is going on inside your body. Since my husband has cut out the foods that bother him, he is a new man with lots of energy. I'm very happy for him and I'm going to go get tested for food allergies/intolerances as well. I think everyone should as a part of their health maintenece. Food allergies/intolerances can wreak havoc on your life. My adivice to you if you do have any is to buy fresh food and cook it your self. We started making and canning tomoto sauces and no longer buy any prepacked foods accept for a few that we know are safe. There are many out there you just have to read all labels carefully and educate yourself on the "secret" hidden places of commen allregens. There are many words that don't sound anything like wheat or dairy or corn. So be careful! Afterall it's your health! Take care and I hope this helps at least one person who is struggling with this problem!
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Please read my post below. I replied to an old posting. I hope it helps!
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What if you don't have a positive diagnosis for CD? I have two tests for positive antibodies, but negative for the most specific for CD. I also had the gene test done, and it came back negative that I have the gene. So, it probably isn't dormant in my case. If I don't have the gene, I couldn't develop the CD later, right?
Are skin tests reliable for food intolerances? I thought they would only show a true allergy...and wasn't too sure about the reliability with even the skin scratch test for allergies.
Do you have any advice for me based on my particular situation? I don't feel good eating GF and I don't feel good not eating GF. And I don't have the positive blood work or gene test or biopsy. I did have the IgA and IgG antibody test come back high...about 3 times of testing.
Life with this is pure H***. I pray for answers and for help...but still, I feel horrible.
Thanks for any thoughts. I'm glad your husband has regained his life.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Beth,
I think the first thing you should do is to go for allergy testing. With my husband, he did the skin test on the arms. He reacted to a long list of things. From there he did some self testing. Say for instance reacting to carrots. He then got to know the foods in the family of carrots, celery most herbs like parsley, basil, oregano and etc. Then he ate those things along with things he know do not bother him. One thing I will say is his doctor told him to only do this sort of self testing in the afternoon, so you've eaten something else. You won't have as drastic of a reaction if you are intolerant or allergic to that food. As far as the skin testing goes, it was accurate for him with his intollerances. I think intelorence to food and actually allergy to it have to be related in some way. So maybe that's why the skin test was still accurate. He's tried most of the foods that he reacted to with the skin test and had negative reactions so that tells me that it was accurate. Just get a referral to an allergist/dermatologist/m.d. if you can find one. Like I said I looked on our insurance companies website at the coverered providers and cross checked the doctors names to see which one was both and allergist and a dermatologist. That's how we found the doctor that has helped so much. Another thing I was to tell you that in my husbands case, the doctor thinks two things cause the new food allergies. Exposure to chemicals at work and at home, and the root canal he had done around the same time he started getting sick. Some people cannot tolerate the chemicals and materials that dentists use in their mouths. That's something to consider too. Doctor Zamm wrote a great book that may help as far as the chemicals go, it's not in print anymore but there are used copies on amazon.com. It's entitled "Why your house may endanger your health" by Alfred V. Zamm. Get a copy. He's got some interesting things to say that may help. Hope this helps too. Take care.
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Have you really educated yourself on all the sources of hidden gluten in foods? MSG, modified food starch and things like that. You can think you are eating gluten free and still be getting trace amounts. Some people can be so sensitive that as little as .01 micrograms of gluten can cause such a severe reaction. I know that's how my husband is. Think of things like cross contamination at home (sharing a toaster, dishes, or the same cutting surface or utensil in stirring G/F food and non G/F food.) Also when eating out, you really never know what you are eating and when you tell someone you can't eat gluten, and wheat, that's really not being specific enough. Most people don't even know what gluten is! Let alone all the hidden sources of it in food today. I would say, that you should stay on the G/F diet and get tested for further food allergies. You may have a problem with dairy as well as other things. Find out, and feel better!
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