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So Many Thoughts

124chicksinger

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124chicksinger Apprentice
124chicksinger
Posted

The more I read, the more I believe gluten has wreaked havoc on me my entire life, and I tested negative both in blood and biopsy.

 

I do not blame the doctor for not taking enough tissue. I actually feel thankful this route was pursued at all; however, though the science says I do not have celiac, it does not rule out sensitivity/intolerance, and that is where I'm getting angry now.

 

I won't list the "coincidental" symptoms I have, or the underlying "could be related to celiac" conditions that I have, but they are numerous and I doubt coincidental.   I would think my doctor, who has a GP practice but IS a gastroenterologist, would know better than to hand me a high fiber diet for the diverticulosis he found during the scopes and, instead, suggest I eliminate gluten for a few months to see how I feel.  But no, I said I wouldn't follow the HF diet but rather continue eliminating gluten, and he said "ok, you do that." I feel ... unheard, and unvalidated, and left to fend for myself.

 

2.5 weeks eliminating gluten, and looking to avoid the hidden insidious gluten, and already my bowels are working differently.  The urgent explosive D is gone, and I have only had a different kind of D twice.  After the scopings, I did not have a bowel movement for 6 days.  When I did, it was solid and plentiful.  Thereafter, I am going either every other day, or every 2 days, and recently, 2 days in a row!  It is solid and plentiful, always.  This is new for me.   I am used to not going for 3 to 4 days, followed by some form of D.  Then I recall recently when I was making the connection of gluten - the day I ate 2 Twizzlers and in 5 minutes had urgent "like turning on a faucet" D (only to discover they are made of wheat), and another time about 7 minutes after eating a half sandwich on rye bread.  Also, too many times to mention after eating chinese food for lunch, with lots of soy sauce (and who knows what else), having to run to find a toilet, and the same with lunch pizza--and only like 3 months ago finally putting 2 and 2 together and making these connections.

 

I find that I am not hungry now, having eliminated the gluten.  I have no cravings.  I am to a point where I could care less about food.  Food is becoming more of a chore/necessity than a desire.

 

So I do not have celiac - my body has not produced antibodies, and no damage could be found in my bowels.  Still, I believe there is a connection, so either I'm crazy and in denial, or I'm correct. 

 

Skin prick tests showed positive for oats, barley and rice.  I am still eating a bit of rice.  Maybe my issues are these allergies and not gluten related, but then again, there is gluten in barley and oats, and I definitely ate a lot of oatmeal, and certainly barley in gluten-full canned soups, quite a lot.  This is confusing to me.

 

I plan to continue with eliminating the gluten to see how it impacts my life because it can't hurt me, and could help me.  I wish I had a supportive doctor or some sort of guide who would say - yes, this is a good thing to do, instead of someone who dismisses the notion and hands me a xeroxed high fiber diet, which I believe right now, is the worst thing for me.   Being diabetic, I followed the ADA guidelines, and now I feel shame on me for having done that - but that is a different issue altogether. That they advocate high carbs is shameful. 

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Celiacandme Apprentice
Celiacandme
Posted

It can be hard during this road to find a supportive doctor. Seems so many of us experience that. I would think that you could easily be intolerant without those tests showing positive. I'm new to all of this still though.

 

I hope staying gluten free continues to be good for you and eliminating your other food allergies, too. (Rice!)

 

And you aren't crazy...you know your body better than anybody else! Keep us posted on how the diet is going for you!

anti-soprano Apprentice
anti-soprano
Posted

No one in their right mind would eliminate gluten unless it didn't make them feel better.  It's far too much work!!  Continue to do what you know is best for your body.  The celiac blood tests are also very fickle.  Do you have DH?  The blood tests for people with DH are only positive 40% of the time and 100% of people with DH have celiac disease.  You most likely have a gluten intolerance, but thought I'd mention the other complications to celiac testing just in case.

 

Have you read "Wheat Belly"?  The author, also a doc, really lays into the whole high fiber diet for diabetics as being counter productive and actually unhealthy.  Shameful is right!

124chicksinger Apprentice
124chicksinger
Posted
  • Author

Thank you both for your replies.  Eliminating the rice will likely come in time, but I am cutting it down.  

 

I do not have DH, but I did have, and currently have what looks like petechia rash on my right foot trailing up the ankle, a bit on my left foot, and a smidge on both hands.  What I mean is they look like petechia under the skin, but the dots can be felt...they are raised...so likely it isn't petechia at all, but a rashy reaction to something, possibly the rice.  Sometimes they itch, sometimes they get hot.  I put cream or aloe on them and they seem to "heal". 

 

I chose to eliminate the gluten regardless of the non-diagnosis, and see how I feel.  Already seeing improvement in my bowels, and we'll see what else improves as I continue.

GottaSki Mentor
GottaSki
Posted

Thank you both for your replies.  Eliminating the rice will likely come in time, but I am cutting it down.  

 

I do not have DH, but I did have, and currently have what looks like petechia rash on my right foot trailing up the ankle, a bit on my left foot, and a smidge on both hands.  What I mean is they look like petechia under the skin, but the dots can be felt...they are raised...so likely it isn't petechia at all, but a rashy reaction to something, possibly the rice.  Sometimes they itch, sometimes they get hot.  I put cream or aloe on them and they seem to "heal". 

 

I chose to eliminate the gluten regardless of the non-diagnosis, and see how I feel.  Already seeing improvement in my bowels, and we'll see what else improves as I continue.

 

You have a positive result in the most important test.

 

Your health has begun to improve gluten-free.

 

I am a staunch proponent of science -- yet the testing for celiac disease remains imperfect.  We do not know what all NCGS encompasses.  

 

Until science catches up...you are ahead of the game.  You know that you can't ingest gluten.  Your health will continue to improve. 

 

All good as far as I can see :)

124chicksinger Apprentice
124chicksinger
Posted
  • Author

Thank you GottaSki. 

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