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Anyone Diagnosed With Ibs

LisaaaNoel

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LisaaaNoel Explorer
LisaaaNoel
Posted

I read that a lot of people initially get misdiagnosed with IBS (or other disorders/diseases.) Anyone here get diagnosed with IBS before getting diagnosed with celiac disease? What was that process like for you? How about symptoms? And finally, recovery?

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oceangirl Collaborator
oceangirl
Posted

Only for 35 years...

Yip, that's how long it took- 5 full GI series over the course of about 15 years (upper AND lower- FUN!), diagnoses of colitis and IBS- wow, what does that mean? Until things ratcheted up at the age of 47 and I got REALLY sick after a bout of salmonella and NEVER got well. 26 nefarious symptoms and enough pain and weight loss ( I've never needed to lose weight) to make me afeared of da worst! Held off seeing the GI (can't imagine why, they'd been so helpful before...) for months until I couldn't anymore and, voila! First one in my life to ask if a celiac panel had been done- the rest is mystery, I mean history...

Takes awhile to heal and work out the glitches, but, almost 5 years in, I feel great MOST of the time unless the evil gluten sneaks in..

Good luck!

lisa

lizard00 Enthusiast
lizard00
Posted

I think the question is really: Who here hasn't been diagnosed with IBS before being diagnosed with celiac? :lol:

My doctor gave me a laxative and an anti-diarrheal in ONE appt... seems strange to give me two drugs that seem to work against each other. :huh: I just ignored him, continued on my gluten-free path and now I'm a year and a half in and feel like a new person. It takes some patience, adjustment, making some mistakes, but it's a process in life and is worth the reward.

Hang in there, you'll make progress before you know it!

BeautifulDay Apprentice
BeautifulDay
Posted
I read that a lot of people initially get misdiagnosed with IBS (or other disorders/diseases.) Anyone here get diagnosed with IBS before getting diagnosed with celiac disease? What was that process like for you? How about symptoms? And finally, recovery?

Yes yes! I am one of the many! I have had many misdiagnoses...IBS, milk protein intolerance, anorexia, food allergies...I was tested for pretty much any and everything from mono and anemia to cancer. The road's been tough, but now that I've found the gluten-free way, it's been amazingly better! I do still have a diagnosis of about 20 food allergies, but am getting retesting this next week (for those of you out there coping with food allergies, know that skin-prick tests result in 50-60% false-positives, so be sure to get more than one test done -- preferably a blood test as well!) So I'll know more what I'm up against after that -- my body was in such a distressed state when I had my skin tests that it is likely I did have multiple false-positives.

All of this aside, the gluten-free diet has been life-changing! Despite the misdiagnoses, finally finding this answer has been a blessing!!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Add me to the list. When I was 14 my doctor told me I had IBS and said my stomach problems were from stress from starting high school. What a joke!

Jallen Newbie
Jallen
Posted

I recently got the diagnosis of "IBS". I have had stomach pains since I was 12! Bad acne, ADD, Tooth decay, osteoarthritis in my lower back ect. I am only 27. I was recently admitted with a small bowel obstruction and they did a scope that came back negative (hadn't eaten gluten in 5 days). The GI doc I went to saw my results and said I was negative for celiac, He wouldn't blood test me! Sooo, I am trying the diet and two weeks later I am feeling pretty good!

mushroom Proficient
mushroom
Posted

I have to agree with Lizard. It is such a joke, really, if it weren't so deleterious to our health and hadn't caused so much suffering. This diagnosis should be obliterated from every doctor's vocabulary!

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MissyJoy Rookie
MissyJoy
Posted

Count me in too. I began going to doctors with different symptoms over 25 years ago - the dermatologist for the watery blister rashes that itched like crazy on my wrist and fingers (said I was allergic to cats... without even testing me), the gyn for intense rectal pain (practically said I was a wimp - my "hemorrhoids" were barely there - but never attempted to explain why I was in such pain), family doctor for the pains in my abdomen and fatigue and strange symptom on my tongue that looked like spots where my taste buds had been burned off, and then the gastrologists who performed the partial colonoscopy and then a full colonoscopy several years later. All of them said that they could find nothing wrong with me and it must be IBS. Their only answer for me was "Eat more fiber." (Whole grains, fruit and salads) The "healthier" I ate, the worse I felt.

Until, in 2005, I gave up eating completely. Everything that I ate hurt me. After about 15 days of rebelling against food, and losing 20 pounds, I managed to get myself to a nutritionist who put me on a Candida diet - which removed all food groups except protein (meats and eggs and fish) and high carb veggies. I was allowed rice cakes, rice crackers and rice milk. I began to improve little by little. It was during this time that I self diagnosed my rectal pain as a spasm of the anal sphincter muscle, due to irritations of the bowel lining and the chronic constipation for years.

Once the yeast (Candida) cleanse was over, I began introducing food groups back into my diet, and little by little, my symptoms began returning. That is when I began researching the web, and found out about gluten intolerance and Celiac disease. I did not even bother to confirm this with doctors, since they have been of no help to me.

I have been living the gluten free life for about 4 weeks now, and have decided to go completely grain free just recently. I am still struggling with sleepiness and weakness, but all of the bloating, rectal pain, tongue symptoms, and skin rashes have disappeared!

yogamommytrainer99 Apprentice
yogamommytrainer99
Posted

Here's something a little different. I may have an IBS diagnosis after celiac disease. Just went to the doc yesterday and he suggested that there may be some IBS masking over my sprue. I was not happy to hear this, but at least he wants to get the celiac disease under control before we even talk about IBS. Having my antibodies tested again, prior to celiac diagnosis they were 153 (normal high is 23)....

LisaaaNoel Explorer
LisaaaNoel
Posted
  • Author

Thanks for replying, everyone.

I am currently diagnosed with IBS but am looking into celiac. I have been gluten-free for about a week and haven't noticed any difference. :( (I know it takes longer, it's just hard because I don't even have a formal diagnosis so my change in diet could very well end up being a waste of time, efforts, and money.) I know it'd be better for me to get tested but I just don't have insurance. (I am also aware that if gluten-free works and I ever want to get tested I will have to go back to eating gluten for months in order for tests to be accurate.) This week has been frustrating. I just hope it gets better. :( Nothing works for my "IBS"

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