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Day 6 gluten-free With A Few Questions...

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My tTg was 5 but because of the significant percentage of false negatives discussed here and my doctors suggestion, I am giving the diet a go. A few questions....

I know it varies a great deal and that full recovery can take a year or longer but at what point do people notice that the diet is definitely helping? I am interested in hearing what sort of range you see here in the forums as well as your own personal experience. My symptoms are primarily neuro--brain fog episodes, general cognitive problems, etc. I was thinking of trying the diet for three months and continuing if I experience any positive results. Does that seem like a reasonable plan?

Can we talk about bread for minute? I tried a corn based bread. Bad, bad, bad. The bagels I tried, which were composed of a melange of wheat substitutes tasted like gas station/vending machine fare. The rice bread wasn't bad but the slices are tiny and it falls apart so easily.

Thanks,

-Mike

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Mike I saw my first result 2 weeks in when it was time for my regular migraine and it didnt happen. In over 5 months I have not had a single full blown migraine. When before gluten free I could have expected 10-12. The depression lift was gradual and the neuropathy took about 4 months to start to improve. I still have a little ways to go there. The vertigo is better, but it seems the last to give it up. But I will take improvement. :)

I ended up giving up all grains and feel so much better for it.

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i noticed a difference in the first few weeks of starting the diet. most of my symptoms were GI but i was having my fair share of mood swings too. now, i can definitely tell if i've been glutened. there's really no question - i'm running for the bathroom, my face will break out and i'll cry if someone looks at me funny.

as far as bread...i haven't tried any myself because i've read that so many people say it's terrible. i guess you can order some decent products from kinnikinnick but i haven't because it's expensive and i can do without. my grandma has Celiac and she makes her own bread. she makes me a loaf every once in a while if i'm in town and it's great. but she's been doing this for 20 years so she's gone through her own trial and error processes!

many people on here say you should stick to naturally gluten free foods at first...try and stay away from replacement foods for a few months until your body heals. a lot of them contain ingredients that are hard to digest at first.

this forum is a great resource...ask questions and browse around. there is a ton of into right at your fingertips!!

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Hi Mike,

We are also new at this. My daughter and I are confirmed Celiacs and my other two little ones are gluten intolerant. It's been 5 1/2 weeks for us Celiacs and 8 days for the little ones.

We felt great at first, then went through die-off. That was awful. It lasted about 5 or 6 days for my daughter and 3+ weeks for me. On the whole, we're definitely feeling better, but it's still very much work in progress. Since it's only been 6 days for you, don't be alarmed if you suddenly take a turn for the worse. I had horrible night sweats, severe muscle aches, headaches, etc. My daughter had dizziness, nausea, and vomiting. Completely different reactions.

As for the food.....We've spent a small fortune trying different gluten-free foods. Everyone's different, obviously, but here's what works for us.....

We've tried at least 8 breads and just found an awesome one. It's "Pamela's Wheat-Free Bread Mix". It's called "wheat" free, but it's actually gluten free and casein free as a bonus! It's hearty and it's super UNtoasted as well as toasted. (We also like a lot of other Pamela's products.) All the other breads we tried HAD to be toasted or forget it. The only downside is you have to mix it up and bake it. At least you do NOT need a breadmaker. Our second favorite is pre-made and comes frozen. It's Kinnikinnick's Robins Honey Brown Rice Bread. Kinnikinnick also makes a good bagel (when toasted) and english muffins. They have a website you can order from. Their graham crackers are yummy too. As for pasta we think the best is from Tinkiyada. They have several different types. Only be careful cooking it -- We've found it to be done much faster than the package directions call for (by several minutes). We've also tried a variety of granola type bars. Most are pretty awful, but my kids like Enjoy Life's carmel apple bars. We like Applegate Farms for lunchmeat and sausage, especially their chicken apple sausage. Another brand we've found that usually has good stuff is Glutino - pretzels and the like. We've also found that ultimately the best stuff is the natural stuff--fruit, veggies and meat.

Good luck! :) Right now, we're in the process of trying to go 100% casein free too. And, I'm actually finding that harder!

Best,

Sonya

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My symptoms were all GI and I didn't notice real change for several months. It took a whole year before I considered my bowels (for lack of a better term) were what I considered back to "normal."

Pamela's makes a really good and easy bread mix. So does Manna from Anna. Bob's Red Mill bread mix isn't bad either.

Haven't had a bagel in 7 years... I'd kill for a real one. Pamela's bread mix has a bagel cooking method that wasn't bad.

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My fatigue, headaches, and D were totally gone within a week. I lost my bloating within a month and I have lost 10 pounds (I had 10 stubborn pounds left over from my pregnancy last year- they just fell off after I went gluten free!).

My son's leg cramps went away within a week. He started having "normal" BM's within a month. He has gained 10 pounds since going gluten free (I gave him my spare 10 pounds!).

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Mike, my impression of the forum is that response time varies considerably. I think if you see any kind of change, good or bad, that is a good clue to stick with it for awhile.

I saw a positive change in constipation problems about 10 days out; it lasted for 10 days, then was worse again. However for me that was a 10 day period the likes of which I never remember seeing in my whole life. My recovery has been complicated though. I was off milk for 10 months, and went off soy about month #4. I have several other food intolerances as well. Since malabsorption and maldigestion was still severe after over a year, and I had highly elevated sugar residue (fecal) that showed I cannot digest dissacharrides, my doctor put me on the SCD in July. I have responded quite well to that--especially the fatigue and brain fog. The fatigue and brain fog is also related to lyme disease for me.

Point being that gluten-free may bring a wonderful recovery; it also may just be part of the answer.

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Thanks everyone for your thoughtful responses. I have other medical issues and there are other possible explanations for my brain fog, etc but I also have reason to believe that this could be related to gluten. It's helpful to hear everyones' time lines and it helps to motivate me to keep going. I am excited to give some of the products suggested here a try. One day at at time...

Thanks,

-Mike

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