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New Gluten-free...how Long Until I Notice A Change?

GottaSki

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GottaSki Mentor
GottaSki
Posted

Good Evening All-

I am trying very hard to be patient...am a 43 year old that has waited years for a correct diagnosis -- after many many many NORMAL blood tests my IgA tTA indicated celiac...had the biopsy to confirm 7 days ago...I went gluten free (well i am learning, but think i have been gluten free) for the past week. How long did YOU wait before symptoms improved after going gluten free? Thanks!

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hez Enthusiast
hez
Posted

I did not feel better for 6 months. Then slowly things improved. By the 7th month I felt completly normal (who would have guessed!).

One thing that made my recovery slower (isn't hindsight great) IMHO was that I continued to have dairy and alcohol. In my anger I felt like just doing gluten-free was hard enough and I was not going to eliminate anything else from my diet.

I learned in month 5 that my lipstick had gluten! I learned in month 6 that eating cheese and pear that had been cut from the same knive that cut bread made me sick (did not find out about the knife until after I was sick).

I guess my point is that it takes time to heal. The healing time is different for everyone. There is a lot of trial and error. Be patient and you will feel better!

Hez

RiceGuy Collaborator
RiceGuy
Posted

It also took six months before I noticed anything much, but far longer for actual improvements. As with many on this board, I found certain sensitivities increased after going gluten-free, and have had to modify my diet several times. Now, slowly, I am starting to be able to add some things.

I think the time it takes depends on how long the damage has been going on, the dietary changes that are made, and probably various other factors which still elude the best researchers.

GottaSki Mentor
GottaSki
Posted
  • Author

Thank you Hez and Rice Guy...I function much better with realistic timeline. Back to being patient and studying my gluten-free manuals.

43 year old female, still waiting for results of biopsy 9 days ago...patience is a virtue or so I'm told.

mushroom Proficient
mushroom
Posted

To heck with the virtue and patience!! :P That's why we went undiagnosed for so long, because we were virtuous patient patients. And look how we suffered... I am an impatient patient now (not obnoxious, I hope, but not tolerant of being put off).

Youdah Newbie
Youdah
Posted

I'm fairly certain that I'm gluten intolerant, but I'm still waiting to talk to my doc about it. When I thought gluten was a problem, I have tried to be gluten free. Every day without gluten, and I felt a little better. Then, I decided that a "little bit" wouldn't hurt me, afterall, I've been eating bread and pasta all my life, and that little bit of Malt Vinegar in the Heinz 57 Sauce wouldn't do anything! Or so I thought. Within 3 hours, I was feeling as bad as I did before I started a gluten-free diet.

How long does it take? I think it's going to depend on you individually, and I think "how long does it take" is going to be partly dependent upon how successful you (and me) are with eliminating gluten and all those little hidden gluten sources, too.

GottaSki Mentor
GottaSki
Posted
  • Author
To heck with the virtue and patience!! :P That's why we went undiagnosed for so long, because we were virtuous patient patients. And look how we suffered... I am an impatient patient now (not obnoxious, I hope, but not tolerant of being put off).

LOL...I hear that...after years of being sick periodically and docs not finding anything...even I thought it might be in my head...until I got even sicker -- while laying down last summer I wrote a journal of all the times I could remember being sick...imagine my surprise to find out that there was one little blood test that no other doc thought to run on me.. tTG IgA...it was the 50th blood test I've had in the past year and the ONLY one that wasn't "normal". If I hadn't been pushy I'd still be wondering what the hell is wrong with me?????

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GottaSki Mentor
GottaSki
Posted
  • Author
LOL...I hear that...after years of being sick periodically and docs not finding anything...even I thought it might be in my head...until I got even sicker -- while laying down last summer I wrote a journal of all the times I could remember being sick...imagine my surprise to find out that there was one little blood test that no other doc thought to run on me.. tTG IgA...it was the 50th blood test I've had in the past year and the ONLY one that wasn't "normal". If I hadn't been pushy I'd still be wondering what the hell is wrong with me?????

oops...also had extremely low vit D. and long history of anemia...but haven't had anemia for past few years

mimommy Contributor
mimommy
Posted

I think it was already mentioned that the time it may take to feel better is in many ways dependent upon how much damage there is in your body. You may want to remove all dairy for a couple of weeks, as the villi (which are flattened as a result of the auto-immune response to gluten) are also involved in digesting and processing the proteins and sugars in milk and cheese. My little girl was actually misdiagnosed as lactose intolerant before finding out it was celiac, but the dairy sensitivity only lasted for a couple of weeks after going gluten free. Also, you may find--as many here have--that the longer you are not eating gluten, the more sensitive to it you become if cc'd (cross contaminated).

Removing gluten from your diet is a complete and total lifestyle make-over that could well change your life forever, but it is a process. Start by reading ALL labels and eliminating foods and cooking items from your kitchen that may be contaminated. Eat simple natural foods at first, then learn some new recipes. You may find, as we have, that you are a better cook and eating tastier, more nutritious meals than ever before!

And, you WILL feel better. Your body is a finely tuned instrument; let it heal and listen to it :)

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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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