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Old 10-26-2009, 10:47 AM #11
happyisme09 happyisme09 is offline
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happyisme09 happyisme09 is offline
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Thanks jcc.
I once began a total organic, additive free, as fresh as possible and raw within reason diet in 2005. Better water, better food choices, etc. I was amazed and in shock when my chronic sinus problems began to wane, the indigestion that I was given a script for nexium for dissipated, migraines became very infrequent and my own IBS problems seem to lessen. No drugs. No OTC supplements. Just really good foods. Lots of super greens too. (still working on high triglycerides with plant sterols. need new blood work)
I believe in it.

I have lists all over the place and run to three separate stores to find the gluten free/casein free foods. (we have no Whole Foods or Trader Joe's nearby. Our "region" lives for fried foods or whatever can be delivered at a drive thru window). Even without the biopsy, we know there is something amiss with her and I believe gluten free is the way to go especially with Hashimoto's. The casein? I have no idea.

Flour, cookies, sauces, pastas, breads, rolls, whatever it takes. I have been doing this along with dd. And I try the new supplements first. She claims a good personal assistant does that. LOL!!!

Her first appt is for Nov 18th. So, I don't even know if the gastro will order the biopsy or not. But if so, I am sure it will be within three weeks of the 18th - this is getting close to the end of the insurance year and close to holidays so appts will be scarce, I am sure!
I asked my dd if it was crucial that she find out if there is damage and she really wants to. So? Keep her on the gluten? Call the doc and see what she recommends?
It is out of her pcp's hands tho.
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Old 10-26-2009, 03:17 PM #12
jccgf jccgf is offline
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Yes, if she hopes to have a biopsy by year end she should keep eating gluten until then. I've seen various recommendations for how much gluten, but usually I see the recommendation for 1-2 slices of whole wheat bread per day.

You do run the risk of having a GI who will insist there is no need for a gluten free diet unless there is biopsy evidence of CD. That is what happened to my oldest daughter, and at age 16 she decided to listen to her doctor (after all, all those years of medical school, the doctor must be right ).

But, your daughter doesn't want to go through all the trouble and expense of having a biopsy, and then not know if a negative result is accurate because she had been gluten free for the month or two prior to biopsy.

Quote:
Are you scheduled for a biopsy? Are you eating gluten?
Any changes in your diet can affect the accuracy of your biopsy results. It is necessary for you to be eating gluten every day for at least 4-8 weeks before the procedure. If you are scheduled for a biopsy and are not eating gluten, talk to your doctor about what is necessary to obtain accurate results. If you have a biopsy and have eaten gluten only a short time before the test, you and your physician will not know if a negative test result is accurate or due to your diet.
University of Chicago Celiac Disease Center

If she'd been gluten free for many months and already experienced improvement... I might question whether it is worth going backwards for the chance of getting an official biopsy proven diagnosis. But, this early into it, combined with her desire to "know"... the best thing is probably to just gag down some gluten every day in the form of a couple pieces of whole wheat bread.

A biopsy can rule out or identify other conditions as well.

We opted for a biopsy for one daughter, but skipped it on the other. I believe a solid case can be built in either direction. The daughter who had the biopsy was "negative" for celiac disease, but they did find lymphocytic gastritis (never mentioned to me but I found it on the biopsy report). Lymphocytic gastritis is suggestive of (but not diagnostic of) mainly two things: H. pylori and gluten sensitivity. H. pylori was ruled out in pathyology. Unfortunately, it wasn't enough for our GI to recommend a gluten free diet.

After the biopsy... if she gets a positive result... there is no controversy. There is no question about the need for a gluten free diet.

If she gets a negative result... there is still some controversy... but a growing number of doctors do acknowledge gluten sensitivity and support a gluten free diet for any form of gluten sensitivity, even in the absense of celiac disease. In fact, two top celiac researchers have now acknowledged you can be gluten sensitivite without having celiac disease, and benefit from a gluten free diet.
http://jccglutenfree.googlepages.com...sceliacdisease


And thousands and thousands of gluten sensitive people, without celiac disease, will tell you of their improvement on a gluten free diet. No matter what the biopsy result is, she should resume a gluten free diet asap after the biopsy. Here is my story: http://jccglutenfree.googlepages.com/thestory

Good luck!
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Old 10-26-2009, 03:30 PM #13
jccgf jccgf is offline
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I'm curious, exactly how long has she been gluten free so far? You may have said, but I can't remember.
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Old 10-27-2009, 04:22 PM #14
happyisme09 happyisme09 is offline
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A week? at the most. 22nd of October. I had begun to introduce gluten free into her diet here and there after reading about it on hashimoto's sites.
But had no idea. Just thought it might "help."

Now we are total GF/CF. In as much as we know what has gluten and what doesn't. I may have inadvertently bought vitamins with BARLEY GRASSES/OAT. Yikes. Well, that doesn't help her out at all and I didn't know to look for them in vitamins!!

I will take those, so it's back to the store for a good multi and some B's. She is on Vit D3, enzymes, probiotics...what else? Can't recall.

Doctor said Vit D3 for sure and magnesium citrate 800mg for the constipation issues she has been dealing with since June, 09. I am looking around here for other suggestions for vitamins, minerals, etc that will help a gluten/casein intolerant who also has Hashimotos.
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Old 02-02-2010, 01:35 PM #15
happyisme09 happyisme09 is offline
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Quote:
You do run the risk of having a GI who will insist there is no need for a gluten free diet unless there is biopsy evidence of CD. That is what happened to my oldest daughter, and at age 16 she decided to listen to her doctor (after all, all those years of medical school, the doctor must be right ).
The GI my dd saw instructed her to eat more fiber filled cereal and she will be fine. Didn't suggest the biopsy and does not feel the blood work findings proved anything.

So, we quickly dismissed him as an *** and continued with the GF diet.

She has lost over 50 pounds, her hair is growing back and she feels so much better. Every now and then she will gluten herself and be sick for days. (Rashes, mouth soars, total brain fog).

The GF is not bad. Other than the cost. Found a small package of GF croutons for $6 just last night - pass! We as a family are eating better and being very careful around her.

Thank you for the information.
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Old 02-02-2010, 02:28 PM #16
jccgf jccgf is offline
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So happy to hear she is doing so much better! It is just amazing how many people improve on a gluten free diet...!
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Old 04-19-2013, 06:33 PM #17
happyisme09 happyisme09 is offline
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She graduated in May 2012, with honors in Management/Finance. Whew!! Was invited to be a contestant to represent her school in Georgia for sales and she proudly accepted.

Flight was smooth and the limo got her to a very nice hotel - that had no way of accommodating her diet. She gets a cab, finds a health food store and buys what she feels she will need for the next three days.

She did well at the competition and was re-imbursed for the taxi and food.

She found a really great job in June that she loves. Her health is GREAT!! For the spring, we are planning to do some trail biking together to lose winter pounds.


(I wouldn't touch gluten if ya paid me)

Thanks to everyone that helped me thru all this.
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