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4 replies to this topic

#1 JessieFree

 
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Posted 28 July 2007 - 02:21 PM

I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?
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#2 Lisa

 
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Posted 28 July 2007 - 02:34 PM

I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?



A gluten reaction can be delayed, and some here can react up to three days later. That might be something to think about. There are also some celiacs that are non-symptomatic. They have no symptoms, but the damage does occure.

Celiac is not always about what you consume in your meals. Lipstick, lotions, shampoos, meds and scratched pots and pans, wooded spoons used prior to being gluten free can also cause problems.

I do not know how long you have been gluten free, but for many here, it has taken months to feel relief from a gluten free diet. There are way too many traps to fall into when you are first diagnosed.

It is really unrealistic for a very newly diagnoses celiac to go 100% - there is just way too much to learn. But it can be done with study and diligence.

Hope that can answer some of your questions. And welcome!!
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 Ed_G

 
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Posted 28 July 2007 - 02:43 PM


For me, it depends. Sometimes I get a gluten reaction right away, and sometimes I don't seem to get any at all.

Ed in MD

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banana baby
epilepsy dx'ed at 15

#4 Mickide

 
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Posted 28 July 2007 - 04:58 PM

I have been walking through life with no idea I was Celiac or real symptoms from gluten. I just thought it was me, how my body was, never really thought anything was wrong (except losing 30lbs). It is actually my biggest fear about my recovery, that I won't know if I accidentally ingest gluten.
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Positive biopsy 7/24/07

#5 jacqui

 
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Posted 03 August 2007 - 10:47 AM

After I was diagnosed my sis ter kept denying she had celiac b/c she did not have symptoms or so she thought. 10 mos. later she was + for celiac disease, anemia, osteopenia, vit. deficiences... Since gluten-free she is feeling much better and relized she did have symptoms after all but she just thought it was normal ie bloating to looking pregnant after eating-she just thought she ate too much...

She also became sick going gluten-free at first. Every "typical" symptom of celiac disease she had on a gluten-free diet!! :blink:


I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?


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IBS 1994
Endometriosis
Hashimoto's auto immune disease
Diverticulosis
Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease
HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!
Insomnia
Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel
Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.





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