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Does It Ever Get Better?


luceydiana

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luceydiana Explorer

I'm getting frustrated lately and I was wondering if there is anyone out there with some encouragement. Does it ever get better?? Will we ever feel "good" again? I've been gluten free for almost 6 months now and still have major stomach issues. Will that ever go away?? It's getting very depressing.

Please someone tell me something positive.


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aikiducky Apprentice

I've been gluten free for almost one and a half years now and I feel great. :) Six months into the diet though I did still feel crummy a lot. I had gotten better in some respects but I also had some symptoms that I didn't have before going gluten free. But nowadays I feel fine unless I eat gluten or dairy. I hope you will soon, too!

Pauliina

mouse Enthusiast

My stomach issues are all gone. The only time I get sick is if I get cross contaminated and that is very seldom. I have been gluten free for 2 years and I was much better after 6 months. Could you possibly be getting cross contaminated? Have you checked your lipsticks, shampoos and do you have a toaster that has never had regular bread in it? These are all just suggestions, but you have probably already thought of them. I hope you feel better soon.

flagbabyds Collaborator

you should be feeling better soon. It does take a while to make it completely better, but over time you will start noticing positive effects. Just as long as you are cutting out all gluten sources, you should be feeling better soon.

Carriefaith Enthusiast

I started to notice some improvement after about six months on the diet, but I never really started feeling better until about 1 year on the diet. During the first year on the gluten-free diet, I felt like you and I was getting very frustrated (I am sure you could find some of my old posts of me wondering what was going on with myself). During that time, I realized that I had issues with dairy products and that I was eating gluten free chips that were contaminated so that probably contributed to the problem. After a year, I started to feel so much better. There is hope!

marciab Enthusiast

My digestive problems cleared up about 5 - 7 months into the gluten free and food allergy diets. I did both at the same time, because I was in pain 24/7. Also, stopped eating meat and all processed foods. And I eat organic when affordable.

Symptom relief may have happened sooner if I had realized I was getting soy lecithen and oat bran regularly in my meal replacements powders. I knew they were hurting my stomach, I just figured it was all the vitamins in them. Now, I just use rice or hemp protein and eat healthy.

I'm hoping this diet will eventually help with my CFIDS/FM symptoms too. I've seen a little improvement, brain fog gone, more energy, but nothing concrete yet.

Hang in there ... Marcia

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
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    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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