# Have any of you with IBS been tested for Celiac Disease?



## the2ofus (Mar 13, 2004)

My daughter and I have almost all the same symptoms. I had her tested for a lactose intolerance and it was positive. When that didn't take care of her problems I took her to a pediatric GI doctor. He did blood work and decided that she has IBS. The blood work came back as a "false positive" for Celiac Disease.(IGG-Irregular IGA and IGE-Negative) He said she does not have it. I am not conviced yet.Have any of you been tested for Celiac? Have you had the stool test for Celiac?Here are our medical stories: sorry it's soo long. I'm just looking for more information because I am going to the doctor the end of this month to get the same blood work she had.Thank youRobinWhen I was a child I remember always having stomach aches and Diarrhea. It was there as I grew up but not very severe. On occasion I would get diarrhea but not be “sick”. In my right calf I get a pain that feels like it is in the middle of the bone. As a teenager I was on iron pills for a deficiency.When I was 22 my son was born and the next day my stomach went haywire. After a couple of months I linked it to dairy for the most part. This was a major part of my diet. I started to watch what I ate and use lactaid tablets. I have diarrhea still even when I don’t have any dairy. It comes and goes. I could be ok for a few days then have it for a couple. I can’t link it to specific foods. I have heart burn a lot, a few times a week. On occasion I feel “foggy”. ( Almost claustrophobic). I don’t know if it is after certain foods. I get Migraines and tingling in my fingers occasionally. I am tired most of the time and out of breath often even though two doctors told me I no longer need my daily asthma medication. Not all the time but enough to notice my stools are fatty and float.I often have a gassy stomach. Sometimes I get a pain in my chest that goes straight through my body and out my back. I believe it to be gas. The pain is incredible, and wakes me out of my sleep. (I usually burp a lot and tums does nothing. I just wait it out). It has happened a couple of times while awake. When I eat certain pasta dishes such as boxed macaroni and cheese and chef boyarde, I get a funny tingling in the back of my throat. I also often get an uncomfortable feeling in the pit of my stomach.My Daughter was colicky when she was born, We tried soy formula, iron free formula and drops for it. I think it was a little better but it didn’t completely take care of it. As the years went on we realized she also was lactose intolerant. She actually went for the test. 10 minutes after drinking the solution she was running for the bathroom. She was positive. The test was taken when she was 10 and now she’s 12 ï¿½. Eliminating dairy didn’t take care of all her problems either. She has heartburn, Diarrhea, stomach pains, headaches occasionally, Dandruff, Leg cramps, gassy stomach, Chunks coming back up(grayish/tanish in color). There may be more that I have forgotten at this time.She went to a Pediatric GI Doctor. He diagnosed her with Lactose intolerance and Irritable Bowel syndrome. He did the blood test for celiac. The IGG came back irregular but the IGA and IGE were negative. There for he said she has a false positive which means she does not have it.She is taking Prevacid for heart burn and it is helping. He gave her Bentyl for stomach pains and diarrhea. She hasn’t taken it yet so I don’t know if it works.


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## nelly2 (Dec 19, 2003)

I have a diagnosis of IBS with diarrhea being predominant. Recent blood work ruled out Celiac disease, but I responded to a gluten free diet so my doc wants to do a biopsy of the intestine to see if the cilia is damaged, dead, etc. I do not believe that I have the disease, as my blood work came back normal, I've never been anemic and I've never had probs keeping weight on. I'm willing to go with the docs rec because he is highly regarded. Try a gluten free diet for awhile and see how your body responds. Be very careful because there is gluten in most processed foods. Contact Celiac.comm for a forbidden foods list. I've lost about 7 pounds in a month just because I'm having a hard time finding things to eat. I also found out from my regular doc that you can be gluten sensitive without having the disease. If you respond to the diet, I'd suggest going to another gastro for his input. There are some groups who specialize in Celiac disease. Good luck! Nelly


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## the2ofus (Mar 13, 2004)

Hi Nelly,Thank you for your response. Could you give me the name of the doctors that specialize in Celiac if you are in the Fairfield County Connecticut area.I had heard unless the doctor catches the right spots on the biopsy it could be a false negative. This is why I want to find out more info about Enterolab and their stool test. It looks like it is acurate? I have been reading alot on the Celiac.com message boards and there are tons of cases that the biopsy and blood work were negative and the stool tests were positive. They go on the diet and feel great.I wish my daughters doctor was more like yours. He saw the false positive and is sure it's not celiac. At least your doctor is open minded to the thought of it being that.ThanksRobin


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## nelly2 (Dec 19, 2003)

Sorry Robin, but I'm in Texas. Maybe the Celiac website can refer you. My doc was going to do the stool test, but I went on the diet before I was able to give him a sample. Since I've responded to the diet, he doesn't want me to go off of it just for the test. I was not aware that the biopsy was that unreliable. I booked an appt. with him just to ask questions. I'll ask him and let you know. The best thing you can do at this point in between doc appts is to simply try the diet. It is quite restrictive, though. Good luck! Nelly


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## nelly2 (Dec 19, 2003)

I forgot to mention that the diet did not completely rid me of the D. I started using Ibsacol. I've only been on it for a week but it really seems to be helping. I don't know if it would help you, as we've all had different luck with over the counter supplements, but it was worth my $55 bucks.


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## the2ofus (Mar 13, 2004)

Hi Nelly,I was curious since you live in Texas, Do you know anything about Enterolab? They are in Dallas. I wanted to find out if their stool test is accurate. I believe they are the only lab that does it. I have emailed them a couple of times with questions but have not heard back.I'm glad you found something that is helping you somewhat. ThanksRobin


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## nelly2 (Dec 19, 2003)

Robin-I haven't heard of that lab, but I didn't have the stool test. My blood test for Celiac Disease was processed at a lab in California. Nelly


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## StillHoping (Sep 16, 2002)

My blood test for Celiac Disease There is a blood test to detect Celiac Disease?It's been awhile but I recall taking a breath test.I remember because I had it a week after I had a breath test to see if I was Lactose intolerant.


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## nelly2 (Dec 19, 2003)

Yes, there is a blood test for celiac disease, but it is not full proof. That is why my doc wants to do a biopsy. The test was negative, but I've responded to the diet. But also, according to my family practictioner, you can be gluten sensitive without having Celiac Disease, so it is a confusing frustrating thing.


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## StillHoping (Sep 16, 2002)

according to my family practictioner, you can be gluten sensitive without having Celiac Disease, so it is a confusing frustrating thing. Is there another test to confirm gluten sensitivity?


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## nelly2 (Dec 19, 2003)

Not that I'm aware of. Your best bet is to try the diet and see what happens. My sypmptoms decreased within 24 to 48 hrs. Things are by no means perfect, but it has made a world of difference.


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## the2ofus (Mar 13, 2004)

Hi Dee,Go to celiac.com and read their message board. I have found out a lot of information on there. That's where I found out about the stool test. I'm now trying to research the lab that does it to make sure I'm not waisting my money. I read a lot of stories of the blood and biopsy tests coming back negative and the stool test being positive. I want to find out how acurate it is.Robin


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## nelly2 (Dec 19, 2003)

I went to my doc today. I'm having the endoscopy biopsy for Celiac disease on Friday. He said that he typically takes 6 biopsies to make sure you don't get a false negative. He said that the bloodtest is usually about 85% accurate, but you never know. He acted as if doing the biopsy was very important because there is a cancer risk factor if it goes untreated. I'm taking his advice. Oh, he also said that just because the diet doesn't rid you of all your symptoms, that doesn't mean you don't have the disease. You can have Celiac disease with associated problems such as IBS. That makes sense given that the disease would rid havock on your whole system.


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## the2ofus (Mar 13, 2004)

Hi Nelly,I recently found out that there are only two labs in the country that can accurately diagnose celiac. Promethius and Immco. Apparently they do the readings by human which can pick up small details where some of the other labs do them by computer and it is very generalized. I'm going to call promethius to get a free celiac testing kit to take to the lab with me so I can send my blood there to be tested. I need to check with my insurance company to make sure there isn't a problem getting it covered. I would assume they would like to have me properly diagnosed instead of spending extra money on doctors visits etc.Good luck to you on your biopsy!!Robin


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## Fredjs (Mar 21, 2004)

Hi the2ofus,I am surprised that no one has yet had the celiac biopsy, and gotten results back. (the biopsy is supposedly the best method for accurately diagnosing). Perhaps this question would best be posted on the main "IBS" topic heading. I just had a biopsy done last Friday, and then I heard the staff talking about how somebody forgot to label my biopsies. Go figure. Well, I hope that my results are done right, and when they are, I will try to let you know how they turn out. I had a long stretch of relief from my symptoms when I went off of gluten at the beginning of this semester. Then, two months later, when I started having minor symptoms again, I figured gluten wasn't the cause, so I started eating it again. Since then my symptoms have worsened back to their original levels (highly debilitating).So I am curious as to what the results will bring, but I am aware that IBS is unpredictable and erratic, so having relief may or not be associated with gluten in my diet. Besta luck to ya. - Fredfredjs###ufl.edu


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## nelly2 (Dec 19, 2003)

I had a biopsy for Celiac disease last friday. I will get the results this week. He also found gastritis and a polyp. This could be caused by so many things. I'm anxiously waiting.


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## StillHoping (Sep 16, 2002)

Has anyone ever had a breath test tp screen for gluten sensitivity?If so,how accurate was it?


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## the2ofus (Mar 13, 2004)

Hi DeeI have done alot of research on celiac. I havn't run across anything about the breath test. I have found a stool test that a lot of the doctors do not accept as accurate because there havn't been clinical trials on it. There have been so many people on the celiac.com message board that had a negative blood and biopsy tests but then the stool test is positive. Going on a GF diet seemed to help alot of them. I wish I could find out more about this test. I went to my GP yesterday and he is going to try to get my insurance company to approve my blood work going to prometheus labs in california. I'm on pins and needles waiting. I am anxious to find out what I have.Good luck to those of you who just had their biopsies done.Robin


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