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Went gluten-free In Support And Found Out You Had It?


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37 replies to this topic

#31 srall

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Posted 03 June 2012 - 03:40 PM

OH my goodness, it drives me crazy all the people I talk to who I KNOW are having gluten problems but don't even want to hear it. (Because I was the same way I guess)

After my mother who was diagnosed with a wheat allergy and my girlfriend who actually had a dairy allergy (but figured it out doing an elimination diet) convinced me that I should at least try dropping gluten and dairy to get to the bottom of my many health issues, I finally was at least convinced to do a trial.


O. M. G. I felt human again. I wanted to shout from the rooftops "gluten free has changed my life" I was amazed.

Then....after 7 months gluten (and dairy and corn free) I FINALLY realized why I was set on my journey. My 7 year old daughter who had chronic diarrhea and constipation from the time she was off breast milk, who was the tiniest one in her class, who was ill all the time, had cold sores and chapped lips, hives and rashes...she was in much worse shape than I ever was...I realized that God (fate, Karma, the Universe) had made me sick so I would really understand how sick and miserable my child was, and because I understood I could make it better for her.

I;ll never forget the day after she'd eaten a piece of cake and collapsed in my arms that I finally figured out that she was going through exactly the same thing that I was and that I could make her feel better right this minute by eliminating dairy and gluten.

Neither of us have an official celiac diagnosis. The closest I came was the doctor saying "I think you have celiac disease but you'll have to go back on gluten for two months to test" (many symptoms and DH rash)...um no. And for my daughter I wish I did it before I took her gluten free, but I didn't want her to feel that way for one more day.

My 40 year old brother absolutely should be gluten free....my husband can take it or leave it without getting ill. My whole immediate family (dad, mom, brother) has diabetes...So, it's been quite a journey. I worry for my brother, but my biggest blessing is my little girl who is now nine and completely on board. I think she would go on a broccoli and celery diet to never feel sick again like her first seven years.

I know for me a celiac diagnosis is probably meaningless. I hope at this point that a "gluten sensitivity" diagnosis will help at school with my daughter. I will put her in an apartment with a kitchen through college if I need to. I hope she gets to have the dorm experience, but gluten free and safe will be the biggest priorities.

Oh...My MIL did go gluten and dairy free at my urging. I urged because of her cholesterol and symptoms, but what she heard was "weight loss"....she's a believer. She did the classic eliminate for 6 weeks then go out for a dinner and 'cheat" and got very very sick...so she's convinced.

So, I have 2 converts I guess. Wish it were more.
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#32 squirmingitch

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Posted 03 June 2012 - 04:15 PM

I cried reading your story of you & your daughter. I'm SO happy you both are doing great!!!!!Posted Image
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#33 cyberprof

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Posted 03 June 2012 - 08:56 PM

srall, I had a similar situation with my son, but he had less overt symptoms. Sick all the time (colds, flu), not "hardy" like my daughter or my siblings when we were young. No stamina and cranky a lot. D a lot, but not where the doc would think it was bad. Lots of mouth ulcers. So thin. But he didn't complain about stomach problems. When he was 13, I told his doctor that there was something wrong, but I didn't know what. Doc tested for diabetes, leukemia, thryoid, iron deficiency - nada.

A year after I went gluten-free, he was 15 and not in puberty and at my urging he went gluten-free. What a difference! And the thing that made it all worthwhile was his statement: "I didn't know that eating wasn't supposed to hurt." So for 15 years, the poor kid had pain after every meal and thought it was NORMAL. So, yes, I think that my diagnosis was a blessing and I would go through it all again to help my son. And my daughter too, now.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#34 srall

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Posted 04 June 2012 - 03:31 AM

srall, I had a similar situation with my son, but he had less overt symptoms. Sick all the time (colds, flu), not "hardy" like my daughter or my siblings when we were young. No stamina and cranky a lot. D a lot, but not where the doc would think it was bad. Lots of mouth ulcers. So thin. But he didn't complain about stomach problems. When he was 13, I told his doctor that there was something wrong, but I didn't know what. Doc tested for diabetes, leukemia, thryoid, iron deficiency - nada.

A year after I went gluten-free, he was 15 and not in puberty and at my urging he went gluten-free. What a difference! And the thing that made it all worthwhile was his statement: "I didn't know that eating wasn't supposed to hurt." So for 15 years, the poor kid had pain after every meal and thought it was NORMAL. So, yes, I think that my diagnosis was a blessing and I would go through it all again to help my son. And my daughter too, now.


Oh yes...we also had mouth sores and no stamina, so thin...and she was clingy and cranky from the get go. I was amazed how that resolved too. I was also bracing for a cancer diagnosis. I had two friends whose sons were diagnosed with leukemia at that time and the same types of symptoms got them to the doctor initially. I was so relieved we could resolve her issues with food.

And we both remember that chronic stomach ache. Even me in my 40's thought that that stomach ache was normal after eating. When I had her in the pedi's office he asked her if her stomach hurt and she said "All the time." It broke my heart.

Oh...and one more thing and then I promise I'll stop. At the beginning of second grade, right before I "diagnosed" her, her teacher had the students draw pictures of their favorite places and then write a few sentences about why it was their favorite place. They were displayed on the wall outside her classroom. Most kids said things like their grandparents house, the amusement park, a travel destination. My daughter wrote her favorite place was our brown couch and she loved to lay on it and watch t.v. all day. I was mortified because I love to travel and get out and do things and that was her favorite thing. I've since thrown that stupid couch away, and my daughter loves to get out and play.
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#35 jeanzdyn

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Posted 04 June 2012 - 04:06 AM

I did not go gluten free in support of another person. But I did find out on my own, but did not accept that I needed to be gluten free until the diagnosis:

For many years I was plagued, every winter, with severe itching -mostly on my legs. There was no 'eruption', no blisters, no rash, no swelling. I tried many different ways to alleviate that horrible, torturous, burning itching.
I did a lot of research into possible causes of the itching, allergies, illnesses, you name it.
At one point I thought maybe I had hypoglycemia. When I started reading food labels I was well and truly horrified at the enormous amount of sugar I was consuming. So cutting back on the sugar intake seemed to help, at first.

I should mention that for most of my life I have NOT had health insurance, so I felt that I was on my own to figure this out. When I was able to consult a doctor I was always told that it was either an allergy to laundry soap or 'it's all in your head'.

Finally I decided that maybe it was an allergy to wheat. That winter I tried a rotation diet, where I avoided all breads and pastas for 3 days in a row, and on the 4th day I ate whatever I wanted to. Well, the itching went away -completely!
2 years later I decided to get a colonoscopy. I did this because I was 50 and had a couple of acquaintances in treatment for cancer (not colon cancer). I just figured it was a good idea to get it over with.
When the nurse called and told me that, from the colonoscopy (and endoscopy and blood work) they found 'evidence of sprue' I was almost relieved. The doctor later read that as "we think that maybe you have celiac disease".
While I am not happy about it -at least I now have an answer! And being gluten free took away the itching, which had become much worse, with a burning feeling but still no visible evidence. I would do anything to keep the itching away! So being gluten free has been a blessing on that front.
Also, I had a long list of other symptoms, which are mostly relieved by being gluten free. I finally found my way to this forum and learned that most all of my symptoms could be attributed to celiac disease.

I have been gluten free for 5 months and I feel so much better, with many of my symptoms relieved for the most part.
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What is food to one man may be fierce poison to others. —--Lucretius


I miss bread! But I love Kinnikinnick gluten free pizza crust.


Diagnosed celiac disease: November 2011 (biopsy and endoscopy)
other conditions: asthma, arthritis

#36 FoodisLife12

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Posted 11 June 2012 - 09:47 AM

I found out over the weekend that one of my best friend's sister is plagued with a form of Celiac's disease. I am not sure if it is full blown celiac's or just an intolerance but when she comes into contact with any wheat or gluten she breaks out in hives and is currently on some form of topical cream that, from what i understand, can be very harmful if applied to any area of the body with a thinner epidermal layer. That being said, I am the type of person who always wants to help a friend in need and I am highly interested in the food industry myself. I love to cook and adding new dishes to my repertoire is always a good thing, especially when those around you are affected by dietary restrictions. I would like to point her in the direction of this website but I dont want to seem too pushy about trying to help. Just giving friendly and concerned advice every now and then when she is less than confident about her eating decisions would work for now. Unfortunately, I still need to educate myself on the subject so I came here to learn from the people who live with this condition everyday in the hopes of getting the true story. If there is anything you all can offer that will help my friend out I would greatly appreciate it and if I discover any information that might help I will return the favor.
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#37 GwenO

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Posted 19 August 2012 - 10:02 AM

I've been gluten free about 3 weeks in support of my daughter. I tested neg for celiac but have always had significant digestion "issues". I feel so much better - it's really amazing. Like night and day.
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#38 DavinaRN

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Posted 03 October 2012 - 06:22 PM

. My white bumpy patches that covered my arms are almost gone. And, my hair quit falling out.


White bumpy patches? Do they itch, occasionally turn red? I have it most of the time on the back of my upper arms. Is this a form of DH?
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Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money


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