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Sleep
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Has anyone else started having trouble sleeping?  month free of gluten and still havnt had a decent sleep yet since it started   eyes always feel heavy, if i look at something for to long i just started to day dream and have trouble concentrating   does anyone else have these problems and found any way to make it better? 

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I use to always be tired. My boyfirend called it "being horizontal" because as soon as I sat down I fell asleep, especially if I needed to be visually focused on something that had minimal mental engagement. Movies were a joke. This was particularly difficult when I needed to meet deadlines for papers, my MA degree was obtained by me standing to read articles and write. Once going gluten free I was amazed by how much better I felt, and that I did not have to fight to stay awake while driving. However, even the smallest amount of gluten and I am right back to exhaustion, to the point that my eyes cross when trying to focus on driving. I also realized that soy lecithin and fructose caused this same reaction without the nausea. From what I have gathered, until the gut heals, we may be sensitive to certain foods that can cause gluten-like symptoms. This depends on how they are digested, one in particular being lactose because it is digested by the end of the villi which are damaged from gluten. I figured out my other allergies or triggers by taking data on when I felt the symptoms and cross comparing ingredients. I have found that I am only sensitive to these when I have been glutened. After a week or so, depending on how bad the glutening was, I will no longer have symptoms to soy lecithin and fructose. You may just need to cut back to a very simple diet until you have healed and then hopefully you will not have the symptoms. 

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In fact, here is an article that i found extremely helpful to explain why I was getting sick despite being what I thought was gluten free. Reading posts by people who had been gluten free for a while made me super depressed because I thought I was doomed to be super sensitive forever, but reading some of these articles helped me understand. 

 

http://celiacdisease.about.com/od/faqs/f/I-Am-Eating-Gluten-Free-But-I-Still-Have-Symptoms-How-Am-I-Getting-Glutened.htm

http://celiacdisease.about.com/od/faqs/f/HowMuchIsSafe.htm

 

I hope this helps. It may also be something else driving the sleep issues, particularly anxiety. My sleep issues were always worse when I was anxious and I could actually predict when I would sleep walk instead of just sleep talk. If a diet change does not help I would try to see what other factors it may be. I am a researcher so I love keeping data and it really helped me to find patterns that I otherwise may not have realized, but find what works for you. A food journal including symptoms and other important factors (stress, exercise, etc.) may work wonders. 

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This member hasn't been back since they started their account in November.  While Joshy may not repond - others may be interested in the information you have added.

 

When I flare we say I'm horizontal and when I improve I am vertical again -- presents a very clear visual description to family and friends.

 

Certified Gluten Free foods are safe for most people with celiac -- I can't eat them, it is not because of the microscopic amount of gluten they may contain - I have multiple other food intolerances which makes it extremely difficult to eat any processed foods.  I strongly suggest anyone newly diagnosed keep the processed foods - labeled gluten-free or not to a minimum and if possible only eat those with a few ingredients as it can be very tough to know what is bothering you on a ingredient list filled with artificial and chemical ingredients.

 

Welcome to the forum Nay :)

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I could actually predict when I would sleep walk instead of just sleep talk.

Thank you for the post. I just realized my lifelong issue with sleep talking/walking disappeared. *woot*! It makes me wonder if my college roomie has gluten issues. She's 4'10". Our dorm room neighbors told us we'd regularly talk all night long! Sleep gossip ;)

In Biology, I remember my head bobbing and on one occasion, holding my eyelids open. That was not pleasant.

Anyway, I definitely go "horizontal" when my body is reacting and my anxiety increases. My adrenals were put through the ringer so sleep is impacted doubly when my body is in fight mode.

I keep processed foods to just once in a while. In the beginning, I ate a lot of gluten-free food. After going gluten-free, I was completely unprepared for what came next. Being underweight, exhausted, confused, out of my mind and hungry, I ate processed gluten-free food as a transition to get calories in. My aunt told me not to eat that stuff but I was hungry! After figuring out to eat whole foods, it became clear I was on a better track. I am also intolerant of a lot of other foods and don't have the gut for chemicals probably because it all just went on too long.

In '06, we took a trip to a health resort to recover me from an unexplained 2-month stomach illness (hmmm). The place grew their food organically on their land and bought fish from the local fishermen. The before and after pictures are unbelievable. I went from looking ill to the prime of my life (in a week!). I'm guessing I was temporarily gluten-free as the only tortillas they had were corn. I ended up falling ill again after returning home and the saga continued for six more years. I think the sooner this is caught, the better.

Anxiety can give me symptoms and gluten gives me anxiety. It goes both ways for me. The longer I can sleep at night, the stronger I feel the next day.

Welcome Nay :)

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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