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Placebo Effect?

0range

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0range Apprentice
0range
Posted

For everyone who knows my story, I've been in 'the realm of undiagnosis' for a while now. Many people have recommended that I go gluten-free due to my positive gene test and Hashimoto's, but I'm stubborn about a diagnosis. I recently went on a low FODMAP diet for my IBS (which is lactose-free, gluten-free, etc.) for 3 weeks. As I'm not a known celiac, I was not very strict about cross contamination but did not eat the usual bread, pasta, etc. I eat at university; opting for rice and gluten-free options. Yesterday, I decided to have regular toast for breakfast. I stayed at home all day to finish up my homework, and had rice/potatoes and fish fingers the rest of the day. Yesterday my eyes became very blurry; I couldn't focus on the TV or the clock and had to squint. I also felt manic, unable to concentrate. Towards the end of the day, I felt feverish and cold and had heart palpitations during the night. Today I woke up and felt like I was hit by a truck, and feel truly nauseated. I fell off the bandwagon a week ago when I decided to have regular cake on my mom's birthday as well. After eating, I had a noticeable belly ache on the mid-left side of my abdomen... this is the symptom that I had starting in the summer when I would eat seven-grain bread (and which prompted a Ttg-IgA test in August by my doctor, which was negative). Could this all be IBS? A placebo effect? I'm not sure how I feel so awful considering I have not even been gluten-free for all that long - or even "truly" gluten-free since I haven't been careful about cross contamination. Urgh. Time to pursue a full diagnosis? I'm not sure how open my doctor would be for doing an endoscopy if my blood panel was negative. I don't know if I should wait till I see my dad's doctor, who is much more open and did the Ttg-IgA test in the first place. 

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kareng Grand Master
kareng
Posted

Aren't those things bad on the FODMAPS diet?

0range Apprentice
0range
Posted
  • Author

Aren't those things bad on the FODMAPS diet?

 

Hi Kareng!

Which foods specifically from above? If it's the cake and the bread, then yes! I've been low FODMAP except for those two foods over the last 3 weeks. I just don't know what to make of my reaction to them, considering that with IBS, I really shouldn't be :that: sensitive to cake and bread. I didn't have any gut issues per se, except for the brief belly ache, just all these other symptoms that I don't know what to make of.

kareng Grand Master
kareng
Posted

Hi Kareng!

Which foods specifically from above? If it's the cake and the bread, then yes! I've been low FODMAP except for those two foods over the last 3 weeks. I just don't know what to make of my reaction to them, considering that with IBS, I really shouldn't be :that: sensitive to cake and bread. I didn't have any gut issues per se, except for the brief belly ache, just all these other symptoms that I don't know what to make of.

If you have a FODMAP issue, that could be your reaction.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

I'm relatively new at this and am certainly no expert... but I don't think negative blood tests are all that uncommon, even when there is a positive biopsy that shows Celiac.  Non-Celiac gluten intolerance is also a possibility.  If it were me I think I would try a strict gluten-free diet (i.e. avoiding all cross-contamination too) for at least 2 - 3 months.  Then on a day when you don't have to go anywhere test it out with a tiny bit of gluten and see what happens.  If you get a reaction then you'll know you're gluten intolerant.  You won't know if it is Celiac or non-Celiac but in the grand scheme of things I don't that really matters.  (Just my .02)

notme Experienced
notme
Posted

thangs that make ya say:  whaaaaaaa? 

 

where does the placebo fit into the ibs mystery?

0range Apprentice
0range
Posted
  • Author

thangs that make ya say:  whaaaaaaa? 

 

where does the placebo fit into the ibs mystery?

 

I think it's just because it just feels like its in my head :( seeing as I've eaten bread all my life, and ate it up to early last year. My gut problems started after I was overmedicated on thyroid medication. Colonoscopy just showed some inflammation etc but it was not significant. I had bad bacteria built up, and was medicated for that. And apparently, now I can't digest bread. I don't know if it's a temporary thing, if I have celiac/gluten intolerance, or something else. It's a bit frustrating. I always thought IBS resulted in digestive complaint such as bloating and diarrhea (which I do have) but I have all these "extra" symptoms that make no sense at all.

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

... I've eaten bread all my life, and ate it up to early last year. My gut problems started after I was overmedicated on thyroid medication.

 

Being able to tolerate gluten and then having Celiac show up at some point, seemingly out of the blue is not uncommon.  Many people do not get Celiac until much later in life - others get it when they're very young.  Sometimes it can be triggered by an illness, pregnancy, trauma, etc.

Up until my diagnosis I could eat gluten with no symptoms at all and only got tested because Celiac runs in my family. 

GF Lover Rising Star
GF Lover
Posted

Hi 0range,

 

I'm just wondering, were you eating gluten free at the time of your test?  Did you start gluten-free after the test result?  

 

Colleen

kareng Grand Master
kareng
Posted

I think it's just because it just feels like its in my head :( seeing as I've eaten bread all my life, and ate it up to early last year. My gut problems started after I was overmedicated on thyroid medication. Colonoscopy just showed some inflammation etc but it was not significant. I had bad bacteria built up, and was medicated for that. And apparently, now I can't digest bread. I don't know if it's a temporary thing, if I have celiac/gluten intolerance, or something else. It's a bit frustrating. I always thought IBS resulted in digestive complaint such as bloating and diarrhea (which I do have) but I have all these "extra" symptoms that make no sense at all.

 

 

You say you had a colonoscopy to look for Celiac?  That isn't the right end.  Did they do an endoscopy, too?

0range Apprentice
0range
Posted
  • Author

I just wanted to say that I really, really appreciate all your replies.

 

Hi 0range,

 

I'm just wondering, were you eating gluten free at the time of your test?  Did you start gluten-free after the test result?  

 

Colleen

 

Hi Colleen, I was not eating gluten-free at the time of my test. The doctor tested my IgA and Ttg-IgA levels before my colonoscopy in August. My gut issues started around March of last year. I was overmedicated on thyroid medication, which caused weight loss and diarrhea (yay wrong dose ._.). And then gut health has been downhill ever since.

 

I did not start a gluten-free diet (mostly low FODMAP, which includes abstaining from wheat, because the dietitian recommended this :)) after the negative test. At the time I didn't think I had a problem with my diet, just that eating a certain kind of bread was giving me a belly-ache which prompted the doctor to check my Ttg-IgA levels. He said that celiac is more common in people with hashimoto's - no one in my family has it however (my dad has a stomach related autoimmune disease called atrophic gastritis). I started low FODMAP only 3 weeks ago, getting tired of my loose stools/bloating/etc. situation. It has helped the bloating. I had toast yesterday on a whim, figuring it was ok to do since low FODMAP is mostly a guideline and you don't have to abstain completely. Then started having some weird symptoms that I didn't have, or didn't notice I had back when I was eating normally. I had a burger today I've regularly ate before starting low FODMAP and have had severe joint pain and fatigue all day. Slept and felt nauseated, a little feverish. Almost kind of classic IBD symptoms (more on that below)... so I don't know if I'm developing IBD, if my body is rejecting crappy food (hamburger I can understand, but regular toast, I'm not sure?). Would it make sense to react so badly to a certain food like wheat just because you have not been eating it for 3 weeks?

 

You say you had a colonoscopy to look for Celiac?  That isn't the right end.  Did they do an endoscopy, too?

 

Hi kareng. I had a colonoscopy because due to my symptoms (feverish, joint pain) the doctor suspected Crohn's, or another type of inflammatory bowel disease. They did not find anything that indicated that, just some inflammation at the end of my small intestine. The biopsy was labelled as "lymphoid hyperplasia" and "focal colitis" indicating that there was just inflammation there which definitely could be the cause of all of this. I'm trying to find more information about diet and lymphoid hyperplasia but have not found anything. No endoscopy.

SimonSez0721 Rookie
SimonSez0721
Posted

Hi, like you I am still in the pre-diagnosis phase so please take my comments with a grain of salt. However, I also had a negative blood panel, which from all, that I have read is very common. When my PCP finally sent me to a GI, I did not ask for celiac testing but mentioned my GI symptoms and negative panel, he immediately scheduled an upper-endoscopy to check for Celiac as well as a couple of other exams. He said, "I don't want you to go another 5-6 years without a proper diagnosis.". My understanding is that a large number of people diagnosed with IBS are actually misdiagnosed Celiacs or non-Celiac gluten sensitive.

Yes, gp get tested. Please get an upper-endoscopy, or maybe other here are recommending the stool, or saliva testing. I do not know. But, undiagnosed Celiac is a problem and it looks like you are a candidate.

Good luck!

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