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Going Back To Gluten


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9 replies to this topic

#1 Aightball

 
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Posted 22 April 2004 - 01:24 PM

Hi all.

First off, I hope this is the correct forum. If not, please re-direct me.

My doctor and I have talked and have agreed that I may not need to be gluten free after all. I have ahd some diahreea and problems with an ovarian cyst of alte and have not had any gluten.

I have been trying things here and there, but aside from Twizzlers, that's been it. Now that I am recovering from the stomach flu, dad has suggested a couple of soda crackers just to settle my stomach.

Would this bea goodplace to start? I'm not sure where to start, but am looking forward to getting backto gluten.

My doctor said that if gluten's my problem I should be seeing improvement by now (I"ve been gluten-free since January), and esp. since I've seen improvement with my dairy allergy since going dairy free in January as well.

Where do you start?

-Kel
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#2 kejohe

 
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Posted 22 April 2004 - 03:16 PM

Well... being gluten-free since January isn't really that long. I mean, I have heard countless stories about people who have been gluten-free for nearly a year before they begin to see imporvement. I guess it just depends on the amount of damage you have before going gluten-free. I hope you and your doctor are doing thie right thing.

Re: where to start, I would think baby steps are best, if you do have to go back on gluten. Maybe a couple of crackers are a good idea, or a half slice of bread. Something simple. And stick with the same food in small quantities for a few days at a time, just like an elimination diet. That way, if you do have negative reactions, it's very easy for you to pinpoint the offending food.

Good luck, and take care of yourself.
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Kathleen
Son has been gluten-free since December 2001

#3 Kim

 
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Posted 22 April 2004 - 05:19 PM

Were you accurately diagnosed celiac disease -- biopsy/blood test? If so, I'd give it more time to show improvement and would not start taking in gluten. You may wish to get a second opinion from a medical doctor (gastroenterologist) who specializes in celiac disease.
good luck.
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#4 Aightball

 
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Posted 22 April 2004 - 06:18 PM

HI :)

Kim>

I wasn't actually diagnoised with celiac disease. I've had a biopsy and have talked with a GI doc. My allergist suggested I try being gluten-free for a couple of weeks and see how I feel. I felt somewhat better, but not great, even now. That's why my doc and I decided that maybe that this isn't the answer to my problems.

I'm getting my cyst checked out on Monday to see if that's causing the problem. I've had the stomach flu this week and now canont eat *anything* without diahreea :(. Hoping to be over that soon, too, as I am hungry, just can't seem to eat anything.

-Kel
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#5 wildones

 
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Posted 23 April 2004 - 01:01 AM

My doctor and I have talked and have agreed that I may not need to be gluten free after all. I have ahd some diahreea and problems with an ovarian cyst of alte and have not had any gluten.

I have been trying things here and there, but aside from Twizzlers, that's been it. Now that I am recovering from the stomach flu, dad has suggested a couple of soda crackers just to settle my stomach.

My doctor said that if gluten's my problem I should be seeing improvement by now (I"ve been gluten-free since January), and esp. since I've seen improvement with my dairy allergy since going dairy free in January as well.

Where do you start?

-Kel

Hi
I would definately recommend a much longer TOTAL elimination of gluten from your diet. It will NOT hurt you, it is actually a very healthy diet and may be very beneficial to you. Problems with dairy are often associated with gluten intolerance.
Are you certain you actually had the flu ? Vomiting and diarrhea can easily happen if you are 'sort of' gluten free (your body is starting to heal) and then you introduce even small amounts of gluten (twizzlers).
There is along list of foods on this site that need to be eliminated in order to actually be gluten free.
You do not have to have celiac disease to have a problem with gluten. Celiac disease is when verifiable damage has occured. Please read this article from this site.
www.celiac.com/st_prod.html?p_prodid=946&p_catid+5&p
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#6 debmidge

 
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Posted 23 April 2004 - 01:39 AM

Just one or two comments....
Did you have a blood test for the antibodies? Perhaps your biopsy is negative as the test equipment didn't pick up damaged tissue and took a healthy piece, as sometimes can happen in biopsies?

Were you ingesting gluten unknowingly during the gluten-free diet period?

And does the doctor have a clear plan of what to do next since he has now advised that you must not be sensistive to gluten?
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Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#7 plantime

 
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Posted 23 April 2004 - 05:30 AM

The twizzlers I looked at had wheat starch in them. If you are consuming even that little bit, it will prevent you from healing. Try eating just meat, fruit, and vegetables for 4 weeks. No processed foods, no dairy. It is very common to have celiac without a positive biopsy. I read somewhere that celiac is actually the severe damage done by undiagnosed gluten intolerance. Make certain that you consume absolutely NO gluten for 4 weeks to test the diet properly.
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Dessa

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#8 Aightball

 
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Posted 23 April 2004 - 03:18 PM

The twizzlers I looked at had wheat starch in them. If you are consuming even that little bit, it will prevent you from healing. Try eating just meat, fruit, and vegetables for 4 weeks. No processed foods, no dairy. It is very common to have celiac without a positive biopsy. I read somewhere that celiac is actually the severe damage done by undiagnosed gluten intolerance. Make certain that you consume absolutely NO gluten for 4 weeks to test the diet properly.

I have been extremely careful. The Twizzlers were an experiment and they didn't bother me at all. The flu has been going around, and I know that's what I had. Right now, we've had two of our 6 kids come down with it, too, so it's going around.

I have been extremely careful over the last three months. If something made me sick, I stopped eating it. I did the two weeks the allergy doc suggested, and did "eh" on the diet. Not great, not bad. After the two weeks, I tried a few things, got along fine.

I have had a dairy allergy before, so that was nothing new to me. Upset stomachs tend to run in our family, but we all know what we need to avoid to be happy and healthy.

THe thought right now is that we are going to rule out problems with my cyst. Moms had two of those before and both have messed with her stomach to an extreme, though that was back in the 50s and 60s. However, I feel that my cyst may be the root of my problem, not gluten. I am going to try gluten for a while and then if I start having problems, go off gluten again and see what happens.

Blood test> No, I have not had this done as of yet. That's another reason I'm excited to back on gluten, is that maybe I *can* have this blood test. I would've had plenty of gluten in me at the time of the biopsy, though I do understand that they can take a healthy piece, since it's random.

Thanks for the advice :). I'm having a very down day, since the end of this flu is wreaking havoc on my system right now, but hope to be in a better mood soon.

-Kel
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#9 lauradawn

 
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Posted 24 April 2004 - 03:27 PM

I have been extremely careful. The Twizzlers were an experiment and they didn't bother me at all. The flu has been going around, and I know that's what I had. Right now, we've had two of our 6 kids come down with it, too, so it's going around.

I have been extremely careful over the last three months. If something made me sick, I stopped eating it. I did the two weeks the allergy doc suggested, and did "eh" on the diet. Not great, not bad. After the two weeks, I tried a few things, got along fine.

I have had a dairy allergy before, so that was nothing new to me. Upset stomachs tend to run in our family, but we all know what we need to avoid to be happy and healthy.

THe thought right now is that we are going to rule out problems with my cyst. Moms had two of those before and both have messed with her stomach to an extreme, though that was back in the 50s and 60s. However, I feel that my cyst may be the root of my problem, not gluten. I am going to try gluten for a while and then if I start having problems, go off gluten again and see what happens.

Blood test> No, I have not had this done as of yet. That's another reason I'm excited to back on gluten, is that maybe I *can* have this blood test. I would've had plenty of gluten in me at the time of the biopsy, though I do understand that they can take a healthy piece, since it's random.

Thanks for the advice :). I'm having a very down day, since the end of this flu is wreaking havoc on my system right now, but hope to be in a better mood soon.

-Kel

"If something made me sick, I stopped eating it."

Sorry, my quote didn't work. Anyway, does this mean, that you would eat something and if you had a reaction to it... avoid it? It just wasn't very clear. If you consume gluten, even in the smallest of amounts, you can have a reaction days later. You may not even know. In all honesty most of us probably notice a reaction within minutes or hours, but it is possible. You said in your post, "that after a couple weeks you tried a few things and got along fine." Two weeks is probably not enough time to see a signifcant enough change, to notice a difference after eating something with gluten in it.

Hopefully they will find out something soon.
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#10 Aightball

 
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Posted 24 April 2004 - 05:02 PM

Laura>

Don't worry :), the quote thing gets me too sometimes, lol :).

Yes, I should have been more clear, in that if I had what I thought was a reaction I avoided that thing.

I guess my thing is that even when I *did* have something, even days later, I still felt fine. It's actually normal for me to have an upset stomach from time to time, as it is for my parents.

I'm hoping, too, that we find something. I keep meaning to check back with my GI doc, but will wait now until we hear from the ultrasound, since I'll be back at the GI's if that doesn't help us.

I'm wondering if it's the cyst (or possible lack of) that's doing this? I don't know much about those. I also plan to chat with my allergist on Monday to see what he thinks about going back to gluten. Right now, I'm just eating anything that settles. I've never had the diahreea hang on this long after the stomach flu :(, and am on an enterobiotic to replace the good bateria that I seem to have lost. Trying to have some protein tonight :).

Thanks for all the suggestions. I'm kind of nervous to go back to gluten, but I feel that from the few times I've had gluten over the past few weeks, and have done fine even days later, that there may be something else at the root of my problem.

-Kel
confused!
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