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Not Feeling Better

sfamor

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sfamor Rookie
sfamor
Posted

I hate to post something so negative, but I am just in a terrible mood today. I am coming up on a year mark from being diagnosed with Celiac's and going gluten free. I have been EXTREMELY careful with the diet and doubt that I am getting gluten from any hidden sources. I just had my bloodwork redone and my IgG and IgG numbers are back within normal ranges which is promising, BUT I don't feel any better and in some ways actually feel worse. I am still just as exhausted as I used to be, but then no matter how tired I am, I have trouble sleeping and never wake up feeling rested. My brain fog is still ever present and I seem to have some neuro symptoms (unsteadiness at times, little muscle jerks). I used to have awful GERD and it got better for a little while after going gluten free, but now it's nearly as bad as it used to be. I also developed an awful new symptom after going gluten free which is that I started feeling nousceas and vomiting in the evenings a couple times a week. It feels like food is not moving through my stomach to the point of where it gets "backed up", but I actually had a stomach emptying test a few weeks ago that show the opposite- food is moving through my stomach too QUICKLY (doctor couldn't explain why this was happening and isn't worried).

I do have a b-12 and iron deficiency for which I've been getting b-12 shots and taking iron supplements so my numbers should be going up. I've been tested for diabetes and sleep apnea and thyroid issues with all negative results. Endoscopy was normal other than the Celiac's. I've also recently was tested for over 200 common allergy's (skin prick test) at the doctors and all negative. Am I missing something? Why do I still feel SO bad??

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have you tried eliminating soy and casien? Intolerances would not show up on allergy testing so even if you didn't show postive to them on allergy testing they may still be an issue. Also are you taking any meds or supplements? Supplement labels need to be read throughly because some contain barley or wheat grass which isn't safe for us even though the label will say gluten free. Script meds need to be checked through the maker and generics should be checked at each refill. Do you eat out frequently or at others houses that are not gluten free? Do you have a significant other who eats gluten or others who eat gluten in the home and if you do are they being careful not to CC you? Even a kiss from someone who has had a gluten beverage and food can get us if they haven't brushed their teeth. Do you have pets that eat gluten food or are you doing any repair or remodeling work at your home? There are home repair products that contain gluten and can get us through the dust.

Happyw5 Explorer
Happyw5
Posted

I am not much help, I just wanted you to know I understand the frustration. I have only been gluten free for 2 months, and I am feeling much better...However, I have the exhaustion and insomnia as well. I have been having many other symptoms (can't catch my breath..etc ) I have been to dr after dr and they now have me on anxiety medicine and told me to get off the internet...I know that it is my throid I am just waiting for my tsh number to get bad enough for them to treat me. ( I have all the symptoms-and family history) I think its funny though, they had no problem throwing me on anxiety meds-but they won't even try thyroid meds... Don't give up, and maybe try avoiding aspartame... I have even stopped buying chemicals to clean my house with-I really just want to get as chemical free as possible...Good Luck

Kris68876 Newbie
Kris68876
Posted

I am in the same boat. Diagnosed 1 year plus 3 months. I am diabetic (type I, 20 years) I also have the feeling of a full stomach late at night and when I get up in the a.m., after little or nothing to eat. Still bad diarrha and bloating every day. I believe I have been following the diet pretty well... ?maybe not, though,with hidden sources. Also wondering about maltodextrin and caramel coloring.

I am wondering if I have other allergies or intolerances. Also have had Graves Disease, so on thyroid replacement. All meds are gluten free.

Wondering if I am getting problems with gastroparesis?

Lots of questions and no answers.

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    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
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    • Scott Adams
      still struggling with cravings

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