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Embarrassing Symptom....

irishangels

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irishangels Newbie
irishangels
Posted

Hello, I was wondering if someone might be able to help me with this. I am actually scared because this has never happened to me before. I have IBS and some other immune related disorders and because of the IBS I am pretty used to bowel extremes. I don't even take meds for it unless I have not gone to the bathroom for quite a few days. Anyway, I have recently been ill due to a regular virus and a pretty bad sinus infection. Today was the first day I ate breakfast in basically forever! I had 2 pieces of toast with butter and cinnamon sugar. I am lactose intolerant but I know and live with those symptoms. They are tolerable.

About an hour after I ate my stomach was rumbling quite a bit and I was feeling weak and pale (yeah I know when Im pale looking cuz I feel it). I suddenly felt the need to rush to the bathroom. Well it was not exactly diarhhea but it was similar. (Sorry here is the gross part)~~~It was like there was actual fat in the toilet, either that or a whole lot of mucus. This white/gray opaque substance also encased what small amount of fecal matter there was. There was a lot of the fat/mucus stuff. One time there was even some blood encased in the stuff. I went to the bathroom 4 more times after this, all the times included the gradual worsening of the rumbling in my stomach and then the extreme urgent need to rush for the bathroom. It is now several hours past breakfast and the bread that I ate for the first time in a very long time. I actually have not had bread in a long time, I do not have much of an appetite lately and when I do eat I usually eat some kinda meat stuff.

I have a friend that developed Celiac when she was 23 and she had never had problems of any kind before, so I do know that you can get it anytime. They even tested me for it about 2 years ago and it was negative. I have all kinds of other symptoms that I really don't know if they have anything to do with Celiac like weakness, fatigue, nauseaus all the time, and of course all the immune stuff like sore joints, muscles, cramping, etc. I feel pretty stupid about this, seeing as I am a college grad but I have no idea what countries are part of "Northern Europe". I do understand that most Celiac people are descendents from that area. My ancestry is Irish, German, French, English and a smidgen of Native American (Cherokee). Can anyone help me with this strange symptom? Thank you so much!

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mushroom Proficient
mushroom
Posted

Hello and welcome. Even though you have been tested for celiac disease, I would say that now is the time to do it again!! Your symptoms are shouting celiac disease. If you still test negative, you should try a gluten free diet nonetheless, because the testing has a 20% false negative rate, and there is such a thing as non-celiac gluten intolerance (which is actually more prevalent than celiac disease although many doctors have not yet come around to this way of thinking :o ).The fact that you are lactose intolerant as well as having celiac symptoms confirms in my mind that you have intestinal damage from celiac. Call your doctor and get retested, is my advice. :)

GFreeMO Proficient
GFreeMO
Posted

It sounds like typical celiac symptoms to me. i have been gluten free for 2 years and with every accidental glutening, I get the mucus and oily junk. That in addition to your other symptoms sure sound like celiac. Many many people are misdiagnosed with IBS. Why dont you try the gluten free diet and see if you get better.

IrishHeart Veteran
IrishHeart
Posted

Well, I was going to say the exact same thing as Mushroom. :) so I will

just add:

"IBS" (I was told I had that too--what a lame "DX"--I would ask my doc but WHY is it irritable?? he had no answer :rolleyes: ) ) and lactose intolerance and joint pain and yes, even your ancestry

(I am Irish, French, German and Armenian, BTW!)--they are all possible

contributing factors.

Get tested ---and even if it is negative, because that happens all too

OFTEN --a gluten free diet may be the answer.

Best wishes!

ravenwoodglass Mentor
ravenwoodglass
Posted

You do sound like one of us. As was said do get retested. Just because previous tests were negative doesn't mean they will be now. However it sounds like your diet is very gluten light. That could cause a false negative. If you really need to have a diagnosis then you need to make sure you are getting at least 4-6 slices of bread worth a day. If you have been gluten light for quite a while you need to do this for a couple months before testing. After all testing is done then get on the diet strictly. You also of course have the option of just going strictly gluten free. However if you do this and then later decide you want testing you will need to go back on gluten for 2 to 3 months. That can be very painful.

We share some of the same heritage. We do need to realize though that celiac does not discriminate. It can be found in all races. It has been more common in European and Americans but the rates are going up in other peoples. I think because some societies used very little gluten grains for a very long time. Now though you can get a Westernized (heavy gluten) diet almost anywhere in the world. And rates of celiac are going up worldwide.

maximoo Enthusiast
maximoo
Posted

IBS = I Be Stumped!! Most Drs use this dx cuz they are clueless or they know its wheat & just want u 2 keep coming back to line their pockets ur bowels are irritable for a reason most likely due to wheat.

Get retested with the correct test (u will find the recommended test on this forum) and regardless try the gluten-free diet . Now please read everything about cross contamination & hidden gluten. Get advice from ur friend who is celiac you should get support from her. Good luck & feel better!

cassP Contributor
cassP
Posted

i agree with everyone above- you may have had a false positive, OR your doc only tested for TTG and then called it a day. you need to have all 3 antibodies tested- my only solid positive was the Endomysial Antibody.

i had Celiac and IBS symptoms off and on since age 14, but i didnt start getting the mucous material you talk about it untill around age 34... it is scary.. it went away after i went gluten free!!! it was one of the symptoms that prompted me to get out my celiac tests and educate myself.. my pcp and gi just left me undiagnosed tho suggested i go gluten free if i felt better.

good luck to u and hope you get answers and get healthy :)

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ravenwoodglass Mentor
ravenwoodglass
Posted

i agree with everyone above- you may have had a false positive,

I think Cass meant a false negative. False positives are very, very rare if not non-existant.

cassP Contributor
cassP
Posted

I think Cass meant a false negative. False positives are very, very rare if not non-existant.

YES, sorry :/ i misspoke

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