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gluten-free Since 8/15 - How Long Until I Feel Better?


Raining Skittles

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Raining Skittles Rookie

I thought I started feeling better about a week after going gluten-free then I went to a BBQ. I'm totally new to all this and didn't even think that by eating a burger with no bun would be an issue - but now I know that a BBQ grill can be contaminated. I had a horrible night.

A few days went by and I felt a bit better again until I went to lunch with some friends and ordered steak. It came in an unidentified sauce that I'm certain now must have had some gluten in it. Sigh.

I removed all forms of dairy and gluten from my diet starting on 8/15 - gave away all the gluten containing food in my home.

If I don't eat anything at BBQs or restaurants for a while and am really careful (now that I know more about CC and a ton of other stuff), how long will it be until I really start to feel better?

I'm sure the timing varies depending on sensitivity levels, but some semblance of an idea would be really helpful.

I'm only 2 weeks in and I'm already getting discouraged that not only are my symptoms doing some kind of roller coaster ride, but they seem to be getting worse when I have them.


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Gemme Rookie

I thought I started feeling better about a week after going gluten-free then I went to a BBQ. I'm totally new to all this and didn't even think that by eating a burger with no bun would be an issue - but now I know that a BBQ grill can be contaminated. I had a horrible night.

A few days went by and I felt a bit better again until I went to lunch with some friends and ordered steak. It came in an unidentified sauce that I'm certain now must have had some gluten in it. Sigh.

I removed all forms of dairy and gluten from my diet starting on 8/15 - gave away all the gluten containing food in my home.

If I don't eat anything at BBQs or restaurants for a while and am really careful (now that I know more about CC and a ton of other stuff), how long will it be until I really start to feel better?

I'm sure the timing varies depending on sensitivity levels, but some semblance of an idea would be really helpful.

I'm only 2 weeks in and I'm already getting discouraged that not only are my symptoms doing some kind of roller coaster ride, but they seem to be getting worse when I have them.

Hello,

I am NOT an expert but being celia have learned and reading my story may be helpful.

Please do not get discouraged, The worse is over , in my case progress was NEVER a steady graph all the way up , it is like a dancing process two step forward , three step backward and then five step forward again, we should access our progress after every 60 days, only than we can see how much achievement we have made.

Being Celiac we also have many other deficiencies as well, they all add up in our recovery, in my case it is B12 , iron, flote, magnesium,potassium etc, their supplement helped me recover fast.

I am on gluten free since 6 months but still feel I have only recovered 30%, still get glutened now and then, I am still learning to find hidden gluten in my daily life style, that is we all have too, we have No choice. In my early days I was glutened by vitamin Tab. As they were sugar coated and contained gluten. I feel bloating and few other symptoms when I take corn , they say after 1 year I will be ok to add it back in my diet.

So take it easy and feel you are on the right track, it may take some time and few nasty turns , but this is the only way forward. This forum and people here are big blessing , I did not learn from 10 different Doctors , as much I have from being here . People are very Helpful , do stay on this and read as much as you can , you will find your answers here .

I hope this is of some help, my English is not so good as I amnot native. Any thing more pl ask .

God Bless you , hope n pray for yr speedy recovery.

Take care

nvsmom Community Regular

I too accidently glutened myself a couple of times in the first month. Now that I'm done two months gluten-free, I can say that my stomach feels great (I had stomach aches so often before) and it's much flatter, I've lost over 10 lbs, and I don't have migraines any more. I was also discovered to be hypothyroid so many of the same symptoms still persisting I atribute to that.

I think our symptoms get worse because we are not living in a constant state of inflamation and sickness. I prefer it this way though. Cc makes me feel bad, but I do feel quite a bit better the rets of the time... except for the 10 days or so follwing a cc.

Best wishes.

mamaw Community Regular

Old time celiac in regards to healing....

some get instant relief others it can take years & years & some never fully get perfect... usually at least 6 months to notice a change but again some instantly & others wondering when thier healing will come. With that being said you will go through good days & bad , move forward & backslide.....you may go through the grieving process,denial, anger ,loss & so oon ( most of us have been there) then you will come to terms with celiac...one thing I always have newbies think about is for me this is way better than cancer, chemo, radiation, deadly drugs,,,yes, I have a serious illness but all I have to do is watch what I put in my mouth.

Remember to check all scratched pots & pans, plastic utensils, toaster, hand mixer, colander, plastic containers for storage, bread maker, pet food & so on...don't forget about hidden gluten in products.

restaurants sometimes use pancake mix to make scrambles eggs & omelets fluffier, some use instant potatoes & they may have wheat, soy sauces, malt & so on...

As you move along you will figure hout how sensitive you are & at that point you will need to make choices on whether to eat at restaurants & such...

It is a good idea to carry a snack in your purse, pocket, a gluten-free goodie bag for your car & also the workplace... When invited to a party & such make your own food & go to enjoy the companionship of friends, don't make food the focal point for herself....

buy or bake yourself some of your favorite goodies & freeze them so they are ready in a moments notice. This way you will never feel left out....

hth

mamaw

;'

gatita Enthusiast

I'm a newbie here too. Today I am five weeks gluten-free with a couple of nasty glutenings in there. It's been exactly like you say, a roller coaster and even getting worse.

It's only in the last week that I've seen my gut symptoms really getting noticeably better (especially the basketball belly starting to deflate... yay!!!)

So I don't know if that info helps, but for sure don't give up.

PS. I also discovered I'm definitely lactose intolerant (which caused similar symptoms), so now I take a lactaid if I have ANY dairy of any kind. Helps.

Lizanne Newbie

Thank you to all for all of the excellent info, tips and advice. My doctor told me about this site when I was diagnosed in July. You have all been extremely helpful for me!

NGG Newbie

For me I didn't get better while I was still forgetting and accidentally eating stuff I shouldn't have. When I was finding myself nibbling on a bit of a kid's sandwich rather than throwing it out and thinking, "NO!! That has gluten!", I was still getting sick. About five days after not forgetting, I started to feel quite a bit better. I woke up one morning with no headache and not even a slight hint of a headache, and it had been maybe years since I'd felt like that. I think it was a couple of weeks before I felt completely better all day every day. Now if I accidentally have a bit of gluten, I feel at least a bit sick maybe the rest of the day and the next day or two, but it doesn't seem to linger for weeks like it did when I was first getting off gluten.

I will say that when I get CC or accidentally have something that must have a bit of gluten in it, I notice how bad I feel worse than when I was eating gluten regularly. I don't think I'm actually sicker, I just think that it's such a sharp and immediate contrast that I really notice it. If you feel that way all the time, you don't notice it so much.


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cap6 Enthusiast

Be careful at BBqu's. Make sure that the bbq sauce is gluten free. I always take my own spatula for flipping the burger (that is cooked on time foil) as the common flipper may be contaminated. I always stand at the grill and watch mine like a hawk!! :rolleyes:

Raining Skittles Rookie

You have all been amazing, thank you so much! I haven't been glutened since I wrote that post. I actually discovered that apples and grapes were both making me feel bad too, so I'm slowly removing things from my diet that are giving me symptoms and I'm starting to feel better. The roller coaster seems to be leveling out a little bit. I'm still having symptoms, still having stomach pain, but only had diarrhea once this past week and the nausea is almost gone.

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    • Russ H
      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
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