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julie5914

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Hey guys,

I hope you can help me out - I haven't had weight loss or loose stools - I've had quite the opposite. I've gone up 2 pant sizes in 7 months and had IBS with constipation. It is gotten so bad with my stomach that I can't eat a full meal without feeling sick, so I tend to break up my meals into mini meals throghout the day. I have never been tested for celiac, but I do have iron-deficiency anemia. I have never been tested for anything to come to the diagnosis of IBS, so I have been unhappy with that diagnosis even though I have all the symptoms. The only thing that has been ruled out is that I have no blood in stools (which is good!).

I just want to stop feeling so bloated and full - it is awful! Plus it is strange that I'm gaining weight but have iron deficiency. It is hard for me to digest food at all, especially meat. I had shredded wheat with milk yesterday because it is high fiber and high iron, both things I am supposed to have according to the doc, but I felt awful all day. I can't button most of my pants, but it isn't a fat feeling - it's more of distention. Should I try taking gluten out of my diet to see if it helps, or should I push for the blood test? Right now we are focused on getting the iron back up. I started having all these problems about 4 years ago - is it normal for celiac to start in your 20s, or are you usually born with it? Thanks for your input - reading about it doesn't really help without talking to people who actually have it!

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Celiac can be triggered at any point in life. I had a very healthy childhood and then mono was the trigger point for me. Celiac can be triggered by childbirth,pregnancy,surgery,stress, viral infection, etc. You do not have to lose weight with celiac. There are over 200 symptoms that can come with it and every person is different. Not everyone even gets symptoms. The things that you are describing anemia, weight gain,constipation,bloating...those are symptoms of celiac. Also Lactose intolerance can come with celiac because of the damage to the villi. Once a celiac is gluten free then that can go away when the villi is repaired. It can't hurt you to go gluten free but you shoud get tested first unless you just want to go on the gluten-free diet. Also celiac is misdiagnosed alot with IBS. If you want proof you have celiac you may want to consider a blood test or even getting an enterolab done but your body will tell you what you need to know so always listen to your body. Good luck and if you have any questions don't hesitate to ask :D

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You should ask your doctor to get tested for celiac before taking gluten out of your diet. If you have anemia with no blood in the stool (or anywhere else) and if you are injesting enough iron in your diet, then that is a red flag for celic.

I have a friend with celiac whose only symptoms were amemia and fatigue.

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Thanks for your input guys - just to clarify, I started having IBS trouble after I had mono about 4-5 years ago. The past 7 months has been the weight gain and not being eat much, with a sharp drop in my blood levels - I went from mild to moderate anemia. I'm not sure what could have triggered my trouble in the past 7 months - I got married and started running on a regular basis, but no illness or anything, it was more like all the symptoms I'd had in the past 4 years got 4 times worse in the past 7 months.

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Medaka is right mono could have triggered it. Mono is what triggered my celiac to activate and my symptoms got worse for 2 years until I was diagnosed. You could have had a silent case over the years. You should at least be checked for it.

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I've gone up 2 pant sizes in 7 months and had IBS with constipation. It is gotten so bad with my stomach that I can't eat a full meal without feeling sick

Have you told your doctor this? Not to freak you out, but worse things than celiac or IBS can cause symptoms like that. I would really recommend that you tell your doctor and, if you haven't had an internal scan (e.g., barium swallow, colonoscopy etc.) in the past few years, insist that you need one just to make sure that it's not something worse. It really puts your mind at rest to have a scan tell you there's nothing SERIOUS going on, so you can focus on IBS/celiac again... I'm speaking from experience (just had the full set of barium scans).

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Hey guys,

I went back to my doc cause I was having chest pain and things that were apprently caused by my iron pills (for anemia). I am still frustrated because he is focusing on treating the anemia but not finding out why in the world my RBC dropped so suddenly at the same time as the intestinal distress got worse. At the end of the appt. I asked about celiac, and he said yeah, it is rare and that it usually happens in people that have been to 3rd world countries???? He also said that the blood test is not reliable and that a colonoscopy would have to be done. I don't think either of those things are right? I have liked my doctor in the past because he seems to listen and doesn't just throw drugs at me, but I wonder if he is just plain wrong on this?? I doubt I have celiac too, but I do want to rule it out.

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At the end of the appt. I asked about celiac, and he said yeah, it is rare and that it usually happens in people that have been to 3rd world countries???? He also said that the blood test is not reliable and that a colonoscopy would have to be done. I don't think either of those things are right?

hmmmmm I wonder what planet he is from? ;)

He would need to do a blood test and a biopsy of the small intestine, which is done with endoscopy. The Tissue Tranglutamase blood test is quite reliable but a biopsy also needs to be done.

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New news - My doc got a new nurse practitioner that might know more about celiac - she at least was more interested in finding out why I was anemic and pressed for a peripheral smear to check for pernicious anemia, which came back normal (no pernicious). I was a little disappointed actually, because I thought I would finally have a reason for why I was not digesting things well. Oh well. My husband actually told me today that he thinks I am hypochondriac. How supportive!

I have tried being at least wheat free with some success, but I have not been as strict as a should. Yesterday I got very hungry at work and had two pop tarts and a nutigrain bar. I thought I would suffer from it, but I haven't so far. Just still having the IBS stuff.

What's weird is that my sister has the same trouble with her digestive tract. We are keeping each other up to date on what our doctors say.

I have been on iron for about 2 months now I guess and while my hemotocrit and hemoglobin are creeping up bit by bit (still anemic) I am still cold all the time and now my skin is freaking out and still very pale. I am convinced there is still some type of malabsorption going on, but I don't know what or how.

I don't think I can afford Enterolab tests, and I don't want to risk being laughed at or being called a hypochondriac anymore, but I want to feel and look healthy, dangit!

Thanks for letting me vent and any advice you have. I wish they would do more research on IBS to find out the true cause. I think they might out that people that supposedly have IBS actually have other things and IBS is a result.

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Julie-

hey...don't get too discouraged, although i know it is so easy to do so... do you have health insurance to help pay for the tests? they aren't much if you do. no one has come up with any solutions for you yet, and i would definitely encourage you to get tested, and to go to a new doc! if he isn't taking you seriously, you deserve better. your symptoms could be coming from many different causes. i was diagnosed with IBS about 15 years ago, and only recently with Celiac. it is possible to have symptoms from both, as is my experience. and perhaps they can feed off each other. however, IBS is also a label doctors can sometimes uses for a collection of symptoms coming from an illness they are unable to identify. your husband's response is not surprising. unfortunately, these types of ilnesses, autoimmune, IBS are very mysterious in nature and have many causes, many symptoms and variables, unlike more easily diagnosed illnesses. my dad always told me my physical issues were merely b/c i was a type A personality and a worrier. ! your symptoms are not your fault! as i have continually found, you are your own best advocate. good luck to you!

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I just wanted to add to the great advice all ready given...

I would get a refferal to a gastroenterologist. ( spelling?)

Look up a Celiac support group in your area, and get the name of a doc who has actually diagnosed Celiac. (At least the doc won't rule out Celiac baecause you haven't visited a third world country.)

I didn't have much luck with testing, but I still think you would be better off getting the tests. If everything comes back normal, on A GLUTEN DIET, and you still are having problems try the gluten free diet.

Keep a food diary. You may be sensitive to other foods.

From the weight gain, you should have had your thyroid levels tested. Ultrasensitive TSH, would have to be looked at. Auto-immune thyroid disease is associated with Celiac. Hashimoto's thyroiditis and Graves Disease I believe are the most common.

Good Luck, and keep us posted on how you are doing.

Laura

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I just wanted to update this thread one last time so that people searching IBS or archives would know the outcome. In April I drove to UNC Chapel Hill to participate in a research study on IBS that ran several tests that I would not have to pay for but would get copies of the results. They are still doing this study if you have been diagnosed with IBS and are wondering if you have something else.

They ran a celiac blood test among other things, and the blood test was so highly positive that when I called my doctor (the one who doesn't seem to know much about Celiac) to get referred to a gastro doc, the gastro doc did not push for an endoscopy but instructed for me to go gluten free right away. So I now officially have the Celiac diagnosis and have kicked IBS out the window.

I have another osteopathic doctor now who is helping me find out what all Celiac has affected to speed up my healing. According to the EMA results, I had extensive damage. She suspects that my adrenals and thyroid are still suffering from the malabsorption and that my body gained weight because it stored everything it could get and was essentially in emergency mode since I started running a year ago. My body has kind of been in brown out since then. I am not exericising now while I heal up to avoid the extra stress on my body, and I can finally see the light at the end of the tunnel towards being healthy!

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julie- SO glad to hear the news that you were diagnosed finally! i hate that stupid IBS diagnosis--i had the wrong one too. you are going to start feeling so much better. keep us updated!

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>>At the end of the appt. I asked about celiac, and he said yeah, it is rare and that it usually happens in people that have been to 3rd world countries????<<

This is tropical sprue, not celiac sprue (aka celiac disease). Your doctor is not well informed--and I'm being uncharacteristically nice and PC by putting it this way.

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I keep reading about IBS being a junk diagnosis but am wondering what else it could be covering. I have IBS/C and am not Celiac but have gluten intolerance. This week is my one year anniversary of being gluten free. I am also free of many other foods that also give me stomach problems but I am still getting symptoms.

My gastro said typical IBS. Said I don't have any of the colitis problems because I don't get diarrhea (anymore). Calls it a motility problem which I have read and understand sort of what that means but also read this isn't a diagnosis. So what else would cause spasms of the colon, mucus in stool, constipation, gas, distension, crampy feelings, and a feeling sometimes that my stomach is burning (that is the least common)? ALso, when many of these symptoms occur to me I get migraines.

Not possible to go do the study, but I am really at a loss as to what I should be pushing for the gastro to look into.

Stephanie

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Julie:

Good for you. Now that you know, it is something that you can fix.

Check these sites and they will be helpful to you as to what to eat and where to find things.

Congratulation, you are now on the road to recovery.

Let us know if we can help in any way.

Lisa B.

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Julie, So happy for you, too. I have only been a member here for a short time after being Dx in June 05. I have read about your journey to find the cause of your problems and saw myself the 2 yrs. or so before my Dx. I also had the anemia that got worse all of a sudden. My trigger, tho was gyno. surgery in Mar. 04. After that all of my symptoms got worse very quickly. The ironic thing is that the surgery I had was an endometrial ablation, a procedure to treat heavy bleeding which we thought was the cause of my anemia. It was right after that that the emotional and physical symptoms of my celiac disease hit. I'd had stomach problems as far back as I can remember but the brain fog, anxiety, tingling, constant D etc. drove me back to the Dr. The Gastro. said that the heavy bleeding was a "contributing factor" in the anemia. Who knows? It seems like we have to go around in circles for so long before getting the Dx. Sometimes I wonder how we all have gotten as far as we have IN SPITE of the Medical Profession :angry:

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Stephanie,

Have you gotten the results of your endo and colonoscopy yet? I was hoping so much for you that they would tell you something. Have you been tested for h. pylori and ulcers - that is what comes to mind with the stomach burning. How about overall allergy/intolerance testing with an elisa test - that is something I have always wanted to do.

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