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Deciding To Start A Gluten-Free Diet
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I had a blood test for celiac and it was negative and yesterday I had a biopsy and won't have the results until December 17. At first I had decided I would try gluten-free for 3 months anyways to see if I have a gluten intolerance and to see if it improves my symptoms but now I am struggling with the idea. If I knew I had celiac then it would be easy to stick to it but if I don't even have celiac then how am I going to be able to stick to such a restrictive diet. Originally I was going to start the diet after my biopsy but now I am wondering if I should even bother. There are a million different things that could be causing my symptoms so why put myself through all the trouble?? I am very conflicted right now. For those who don't have a celiac diagnosis how do you make yourself stick to the diet?

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Well, my guts react very strongly to gluten (in a bad way) and now I also seem to have a wheat allergy to boot. So that pretty much leaves me no choice but to be gluten-free.

Have you tried eliminating and then re-introducing gluten into your diet? I did that twice, and each time the nasty results clinched it for me.

ps. I mean only if your biopsy is negative of course.

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Yes, this is true--if you eliminate gluten and feel great...and then reintroduce it and feel horrible again, you have your answer. You won't know if you don't try, right? The sooner you try, the sooner you may start feeling well. Believe me--you'll have your answer soon enough, and then you won't mind the "restrictive" diet (which really isn't very restrictive at all).

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The only difference between knowing the answer and not knowing is knowledge. However, if your body reacts positively without gluten and negatively with it...the decision is simple. Plus, if you do have celiac and don't get definitive proof that you don't, ignoring it and continuing to consume products with gluten can have long term effects you may want to avoid. The decision comes easy when you learn your body can be permanently and irreversibly harmed by continuing down the same path, but if you don't have it and gluten-free does not help, then you're right...why restrict yourself at all. Eat what you want and have your GP focus in on what could really be the problem.

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Feel much better without gluten. Like, much better.

Also, I like having good fresh food.

And, the good folks here will help if you have a wobble.

Keep investigating other possibilities, ask lots of questions

Good luck, and welcome

:)

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How long would I have to be gluten free before I could "challenge" it? I know you are supposed to do a minimum of 3 months but if I did gluten free for one month and then ate gluten would that be enough time out of my system to make me feel like garbage if I am gluten intolerant? I am very stubborn and like proof for things so I think it would be beneficial for me to see that it is actually the gluten making me feel like crap, as dumb as that sounds. Also how do you get started? Do you just wake up one day and say no more gluten? I keep thinking I need to do a bunch of stuff to prepare or something.

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.. There are a million different things that could be causing my symptoms so why put myself through all the trouble?? I am very conflicted right now. For those who don't have a celiac diagnosis how do you make yourself stick to the diet?

Putting yourself through "all the trouble" of following a gluten-free diet will eliminate one of the "million things" that could be causing your symptoms. You need to start somewhere right? Eating gluten-free is a heathly diet that is good for you. It doesn't need to be complicated or expensive if you follow a whole foods diet. After you have been gluten-free a while you may not want to go back to eating the "junk" food from before. If you follow a gluten-free diet for 3 to 6 months and then do a gluten challenge for a couple weeks your body should let you know if it likes gluen or not. If your symptoms don't return then you are probably ok with eating gluten. Even if that turns out to be true, you will have learned how to eat healthier, more wholesome foods that will support your body better than processsed junk foods. And that knowledge can help you the rest of your life. Even if you have some other disease, a healthy diet is a positive for your health, not a negative.

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I get sick when I eat gluten, so I am highly motivated to avoid it. I don't have a formal diagnosis, either. I knew within 24 hours that I had found what was bothering me, but I wasn't taking a bunch of masking medications, and I pay close attention to how I feel and react to things. I had lots of non gluten food in the house, which is really important, and had my spouse gradually eat up the "bad" regular food. After several years of sometimes making mistakes with cross contamination, I had it more or less sorted out that I just had to be really insistent on having safe food available, in all situations, to protect myself.

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I had a blood test for celiac and it was negative and yesterday I had a biopsy and won't have the results until December 17. At first I had decided I would try gluten-free for 3 months anyways to see if I have a gluten intolerance and to see if it improves my symptoms but now I am struggling with the idea. If I knew I had celiac then it would be easy to stick to it but if I don't even have celiac then how am I going to be able to stick to such a restrictive diet. Originally I was going to start the diet after my biopsy but now I am wondering if I should even bother. There are a million different things that could be causing my symptoms so why put myself through all the trouble?? I am very conflicted right now. For those who don't have a celiac diagnosis how do you make yourself stick to the diet?

You know what feels better for your belly. Keep in mind that YOU are the one that hurts when you eat/drink something your body can't process. I have fallen off of the wagon before, and suffered for weeks after. That's what keeps me from doing it most days....now that I know how it feels to NOT have tummy pain all of the time, I don't want to go back to all that pain.

I'm to the point that I have to juice. I may eat one small meal per day, but the rest of the time I juice (I AM NOT SUGGESTING THIS TO ANYONE, IT"S WHAT I HAVE TO DO TO BE OKAY), and I've been so much happier & the belly bloat is mostly gone.

I keep all temptations that are my weakness, like no doughnuts in the house.....but the ones that I care little about are here for my family (like bread for sandwiches). Avoiding all temptations is what works for me.

And now I'm staying away from restaurants because of an accidental exposing to gluten because it hurts so bad!

hugs you!

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I think a gluten-free diet would be a good place to start because it does not require medications with all their expense and side effects, and it doesn't require surgery.

You need to be strict about it though. A lot of folks go gluten-free, but they don't consider cross-contamination. Go read the "Newbie 10 " thread to learn about places that gluten hides. Then give it a good try. Three months isn't that long. It'll fly by!

Also, be aware that you will feel worse for a couple of weeks. You will go through withdrawal and probably have headaches and constant hunger. Don't let that bring you down. A lot of us find that even though we get headaches, the OTHER symptoms clear up pretty quickly.

Good luck. If you have any questions, this is the place. We have all been through it and are more than glad to help. :)

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Truthfully it just depends on how sensitive you are. I don't have a formal diagnosis, either. I can tell usually within an hour if I have accidentally had gluten. I feel as if I have the stomach flu when I eat it now. Before going gluten free 5 weeks ago, I just always felt bad.

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I am currently on day 3 of my diet. I decided to go for it. I definitely don't feel any better yet and I am STARVING! I am eating lots of healthy foods and making sure I am gluten-free. How long until I start to feel remotely better if gluten is the problem?

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gluten withdrawl... its just as real as any other addictive withdrawl.... your body will crave it and it will cause many a mood swings and such....

It takes time dear, just hang in there....

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    • 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!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
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