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Hello all,

 

I am new to the site and just need a listening ear...

I'll try to make my story as short as possible.

 

Over the last 10 years, I've gone through a lot of random, seemingly unrelated health issues. I've experienced everything from a sudden diagnosis of GERD (prior to this, I never had issues with acid reflux) to a recent incident of having a seizure and losing consciousness, which has never happened before.

 

Before the seizure, I had been to every specialist possible and had an absurd amount of testing done for everything I was dealing with. None of the doctors could figure out what was going on. Once the seizure occurred, I decided something is going on so I needed to probe a little more.

 

I have a sister who was diagnosed with Celiac this year via blood work and upper GI/biopsy. After doing a lot of research and comparing my symptoms to the classic signs of Celiac, I decided to be tested as well. My blood work came back negative but PCP still referred me to a GI dr. After the blood work (but before seeing the GI dr.), I chose to go gluten-free just to see what would happen. Literally within a week of being gluten-free, I saw the illnesses that once plagued me suddenly begin to disappear.

 

I met with the GI dr. and he decided to do an upper GI and biopsy, which meant I had to go back on gluten. After two days of loading up on gluten-filled foods, the neuropathy, stomach pain, head and body aches, etc. came flooding back. I decided eating those foods for a couple more weeks to get an official diagnosis was not worth it for me because I couldn't leave bed when I was sick. I went back on the gluten-free diet and felt completely better in 1.5 weeks. I tested myself with the on/off gluten challenge 3 times and got the same result. I came to the conclusion that at the very least I have NCGS. So...I've been completely gluten-free ever since, which is about a month now.

 

Today, I took my children to their annual check-ups and thought I'd mention to the doctor the Celiac with my sister as well as my experience. That convinced her we should do a Celiac panel on the kids, but she was even more convinced we should do it when she looked at my kids' charts and noticed both of them lost weight since last year's appointment, although they have a very balanced diet.

 

I don't want to get myself worked up, especially since we don't have the results yet, but the thought of one or both of them having Celiac or NCGS is a bit overwhelming. I am very disciplined and don't have a problem with sticking to the appropriate diet and speaking up when necessary, regarding what they can and can't eat while out in public, but I'm concerned about them when they aren't with me. My 12-year-old is a "by the book" kind of kid, so I'm not as worried about him as I am my daughter, who is very free-spirited. Maybe I'd need to have us all sit down with a dietitian who specializes in this area...And getting my husband to get on board with everything...whew...that's another issue.

 

I don't really know what to ask, but if anyone has any tips on how to deal with this, please feel free to share.

 

Thank you and sorry. I just realized my definition of making my story short is far from that. :)

 

 

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Celiac.com Sponsor (A8):

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Hi lea01,

I don'tt realy no what to say so I gues I'll startt by saying hi!

I'm 14 and hav coelliac too.i hop you gett lotts better now thatt your gluten free.i hop your children don'tt hav it butt I think your supposed to gett better once you ar gluten free.i hav CF too so even though im gluten free now I'm stil verry sick but itts okay I'm alive and thiinking abot positive things.it can be harrd being sick all the time and Everey one around you sick too can'tt it but I think if you don't think abot the positive things and allways the negative then you'll never feel better.the lovelly peopel on this forum tell me to thiink positive and I am and I thiink it hellps.

I don'tt no what els to say but hop you feel lotts better soon and your children too.mayb you shoulld giv your children they hellp mummy when she's sad or sick and I lov hugs too.

I'm terriblelilly sorry abot my spelling I'm dyslexic and my speling is real bad.

Eloise

Thank you for your response, Miss Eloise. Sometimes I do get so consumed with every detail of a situation, that I forget to focus on the positive aspects of it and the things that are within my control. Giving life to the things I cannot control is a waste of time and energy. Thank you for putting things into perspective for me. I'm wishing happy thoughts and healing for you as well.

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Getting a celiac disease or NCGI diagnosis is overwhelming, but knowing what is actually making you sick is a relief! Even if your kids are diagnosed, you will be able to handle it. Just give yourself plenty of time to learn. My strategy has been to stay informed and educated. This forum has been great! I am so thankful for the internet!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Getting a celiac disease or NCGI diagnosis is overwhelming, but knowing what is actually making you sick is a relief! Even if your kids are diagnosed, you will be able to handle it. Just give yourself plenty of time to learn. My strategy has been to stay informed and educated. This forum has been great! I am so thankful for the internet!

You are so right! I am grateful to be able to look up information online whenever I want, and more importantly, chat with others who are living through it. The encouragement from others is priceless. I think hearing from my children's pediatrician that they have lost weight sent me into the dumps because I always pride myself in allowing them to splurge on treats every now and then, but maintaining a healthy mix of meat, fruits, vegetables, etc. A lot of it has to do with my personality, too. I'm almost 40 and just now learning that perfection is not a realistic goal.  :)  Thanks for taking the time to uplift my spirit. 

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I would not worry too much about the weight of your children if they are thriving. Our PED was always after me to change may kid's diet (we ate pretty healthy). She started in the 5 to 10 % club (held for years) and at 14 is at the 50% weight percentile. She fattened up when she hit kindergarten and was exposed to junk food (school lunches, Ha!). Our PED admitted that she had a thin patient chart, meaning she was rarely sick!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I would not worry too much about the weight of your children if they are thriving. Our PED was always after me to change may kid's diet (we ate pretty healthy). She started in the 5 to 10 % club (held for years) and at 14 is at the 50% weight percentile. She fattened up when she hit kindergarten and was exposed to junk food (school lunches, Ha!). Our PED admitted that she had a thin patient chart, meaning she was rarely sick!

This makes me feel good! My children are rarely sick as well and thrive in school, extracurricular activities, etc. so maybe I am allowing my thoughts to get away from me. I'll just relax, wait for the test results, and if necessary, make changes at that time. Thanks again!

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