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Lila2017

Need some advice!

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Hello! I could use some advice/support from people. My sister keeps telling me how unless I have Celiac's I'm just being annoying if I eat gluten free and I am now embarassed about & won't tell people because I don't want to cause trouble.

Anyway here is where I'm at: About 1 year ago I started eating really healthy, cutting out processed foods and I felt GREAT!!! I had regular bowel movements, my energy levels were up, everything was wonderful. Last November/December I started getting really bad constipation (pellet-like poop only). I also had compltely no energy. At the end of the day, I would fall asleep on the couch and sleep for at least 9 hours and still feel exhausted. This continued with some periods being worse than others. Generally it was uncomfortable but didn't cause too much strain on my life. My doctor said to increase fiber but I was already eating a very high-fiber diet. Then around last February I had 3 symptoms pop up: anxiety, depression and tonsil stones. I didn't really acknowledge at the time that i was depressed but looking back on it I can clearly see that I was - crying daily, felt like I couldn't do ANYTHING becuase it was too overwhelming, etc. Anyway, I was too uncomfortable to share how I was feeling with my doctor (I know I should have). Anyway, about a 5 weeks ago my doctor was going to start putting me on medication that i would take daily to soften my stools since my consitpation had been such a common complaint. I just didn't want to do that, I felt like something must have caused all these problems. Around that time I was at a conference where the only meal choices were bread, pasta, pasta or pasta so I had a plate of pasta and it caused a huge giant migrane for the rest of the day. I started looking into gluten and thought I would try out going gluten free. OH. MY. GOSH. I feel like I have my life back! I have rarely fell asleep on the couch since going gluten free, I feel more "with it" at night not like my brain is mushy, my anxiety literally melted away after about a week and my tonsil stones were gone.  Part of me just thinks maybe I made it all up & because I thought going gluten free would help it did but part of me says that clearly things have gotten much much much better. As for the constipation, I am no longer uncomfortable/gassy/bloated but usually having about 2-3 BMs over a 1/2 hour period in the morning. Usually some pellet like, then a rather normal one, and usually some form of diarrhea or ribbon like poop. That is the only part that hasn't completely been fixed so I wasn't sure if people had advice about how long it was until things were more or less normal for them after going gluten free. It has been 3 weeks of completely gluten free.

From this community I could use advice:

1. What do you think? Could my problems be gluten-related?

2. Is it possible that my symptoms showed up so quickly? Is that normal? It seems unusual to me

3. I'm scared to go back on gluten but I know I will need to if I want Celiac's testing. Is that something you recommend? Or should I just accept that I feel better without gluten?

4. Does anybody know anything about fertility and NCGS? My husband and I want to start trying to have a baby over the next year and if I don't have Celiac's I didn't know if I should still be really really strict about gluten or if being a little lax when visiting people and such would be ok?

5. My doctor said that she only really explores Celiac's/Gluten problems with people who have "the opposite of constipation". Is that true? 

Thank you all so much for your advice!! 

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23 minutes ago, Lila2017 said:

1. What do you think? Could my problems be gluten-related?

 

Yes. Gluten can cause all manner of problems. Check the links in this post and some of the info there on testing. Although the info on tests is a little out of date, the top two mentioned are no longer in common usage.

 

24 minutes ago, Lila2017 said:

2. Is it possible that my symptoms showed up so quickly? Is that normal? It seems unusual to me

 Yes

31 minutes ago, Lila2017 said:

3. I'm scared to go back on gluten but I know I will need to if I want Celiac's testing. Is that something you recommend? Or should I just accept that I feel better without gluten?

Your call. If you think you won't be able to stay on the diet otherwise you should definitely get tested.

 

I went back on gluten to try and get answers. Didn't wind up with a celiac diagnosis but did establish that gluten was a big problem for me. NCGS in other words. 

32 minutes ago, Lila2017 said:

4. Does anybody know anything about fertility and NCGS? My husband and I want to start trying to have a baby over the next year and if I don't have Celiac's I didn't know if I should still be really really strict about gluten or if being a little lax when visiting people and such would be ok?

Celiac can cause miscarriages. If you think you may be celiac and are planning on having children you should definitely get the testing done now.  I don't know of studies on NCGS and pregnancy, but the best advice from leading specialist is that NCGS patients need to exercise the same care Celiac patients do.  Of course others may disagree and that's down to them. Personally I avoid all gluten. 

36 minutes ago, Lila2017 said:

5. My doctor said that she only really explores Celiac's/Gluten problems with people who have "the opposite of constipation". Is that true? 

No. Your doctor doesn't sound like she has a full understanding of celiac, which isn't surprising, a lot of the medical profession lack a deep knowledge of it. If you're serious about testing you may want to get another doctor. 

If you read the link I attached I tried to answer many of the obvious questions and provide useful lnks. There's also a forum faq here to use also.

Best of luck! :)

 

 

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1 hour ago, Lila2017 said:

Around that time I was at a conference where the only meal choices were bread, pasta, pasta or pasta so I had a plate of pasta and it caused a huge giant migrane for the rest of the day. I started looking into gluten and thought I would try out going gluten free. OH. MY. GOSH. I feel like I have my life back!

I just wanted to say that this is exactly what happened to me! The only difference was that I'd cooked the pasta myself :) So, I've been 100% gluten free for about a month and things have really improved for me. I know that migraines can be terrible and they can really be a symptom of celiac/NCGS. 

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