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 Balance Beam and more...
Posts: 11511
  
Location: 31 lengths farms | My 13 year old niece is diabetic and her doctors also believe she may have cilliac disease also but the only way to get a concrete diagnosis is to have a stomach biopsy and her parents dont' want to put her thru that if they don't have to. They are following a gluten free diet to see if that helps, been 4 days and my niece says she doesn't have tummy aches anymore. Funny thing is she never complained about tummy aches before, when we asked her about that she said she thought that was just how her tummy was and it was normal.
Anyway, trying to do some research on cilliac disease and diets for an active gymnast/horseback riding/diabetic teenager. The good news is she is very good about following her guidelines for her diabetes so she already knows how food choices affect her day to day health. Was wondering about Curcumin as I've read that cilliac disease is an inflammation issue in the intestine but need to do some more research on how that affects her diabetes also..any insights would be appreciated. |
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Elite Veteran
Posts: 915
Location: SE KS | I think Sarah Gropper at Solid Foundation Ranch may have some insight for you!! I know she's on FB, haven't seen her lately on here, or I missed her!! |
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Balance Beam and more...
Posts: 11511
Location: 31 lengths farms | Thank you!!! |
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 Born not Made
Posts: 2937
 
Location: North Dakota | It's CELIAC Disease .... not cilliac.
My dad has had it since 1991, and it took them 5 years to diagnose him. Was not commonly "thought of" like it is now. Is there a reason why they don't want her to do a stomach biopsy? Of course, I've not personally had one done myself but I don't believe it's that difficult of a procedure and it would confirm the diagnosis.
If she hasn't already, she should be receiving nutrition counseling from her doctor's office.
There are plenty of resources online including the Celiac Disease Foundation.
If she has Type 1 Diabetes, her body already has issues with inflammation. CD is also due to inflammation because it is an auto-immune problem when the body attacks it's own cells (the villi in the intestines). So there are some theories out there about herbal supplements to help decrease inflammation, such as turmeric.
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Balance Beam and more...
Posts: 11511
Location: 31 lengths farms | Thank you R-beau. From what it sounded like the STomach Biopsy sounded a bit involved which scared the heck out of my niece, she just turned 13 so her parents and the doctors agree that she could follow the nutritional guidelines and see if it made a difference and then go from there. I have her a couple days a week for gymnastics and just trying to get as much information as I can, I appreciate it :-)
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 Saint Stacey
| Go to Facebook or google Gluten Free Girl And The Chef. They have some great cookbooks as Shauna has celiac disease and she is also dairy intolerant.
I've cut gluten out of my diet and am doing so much better! I use to get horrible migraines. Since cutting out gluten they are few and far in between.
Don't just look into your food though. If it's truly celiac disease, you also need to watch what kind of shampoo you use, soap, etc. Gluten is literally in everything. |
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 To the Left
Posts: 1865
Location: Florida | It is serious, everytime she eats something she shouldn't the reaction gets worse. My brother-in-law died from it.. Good news is that gluten free is in fashion now. Don't let her listen to people who don't really have the condition convince her that cheating is OK.
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Balance Beam and more...
Posts: 11511
Location: 31 lengths farms | That's I guess the blessing of her having been diagnosed at 18 months with diabetes, she already really understands the consequences of food choices and how they effect her. She is also a competitive gymnast and at 13 knows her body and how what she puts into it can affect how her body functions.
Thank you for the suggest in the Facebook group too! |
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 Expert
Posts: 1302
Location: California | My mother found out a year ago that she is either gluten intolerant or has Celiac Disease. The doctors could not figure out what was wrong with her after weeks in and out of the hospital. I actually one day was talking to her about what she could versus couldn't eat without pain and it dawned on me it could be gluten. She went gluten free and hasn't had an issue since. The doctors told her that in order to test her for Celiac she would have to go back to eating gluten for a minimum of two weeks. So instead of putting herself through that mess she just decided to stay gluten free. The difference between gluten intolerant and Celiac is one is just pain and inflammation and the other can cause serious problems if gluten is consumed. I personally would want to know but I also think going gluten free could fix both of them. |
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 BHW Resident Surgeon
Posts: 25352
Location: Bastrop, Texas | "Gluten free" does seem to be a popular trend these days, that's for sure. A lot of people seem to attribute improvement in a variety of conditions after going gluten free.
This sounds different, however. True Celiac disease is nothing to take lightly. One compelling reason to make a tissue diagnosis (biopsy) is that people with true Celiac disease have a significantly increased risk of certain cancers, particularly lymphomas. If she has proven celiac disease, she needs to be aware of this risk for the rest of her life.
She needs to be aware of the association with other diseases such as Lupus and Rheumatoid Arthritis, in addition to type I diabetes. She also needs to know that this tends to be hereditary.
If she really does have proven celiac disease, then strict adherence to a gluten free diet is imperative.
Short answer: yes, the biopsy is highly recommended. |
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Location: Illinois | Sent you a PM! |
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 Expert
Posts: 1482
Location: on my horse | Bear - 2016-09-25 8:37 AM
"Gluten free" does seem to be a popular trend these days, that's for sure. A lot of people seem to attribute improvement in a variety of conditions after going gluten free.
This sounds different, however. True Celiac disease is nothing to take lightly. One compelling reason to make a tissue diagnosis (biopsy) is that people with true Celiac disease have a significantly increased risk of certain cancers, particularly lymphomas. If she has proven celiac disease, she needs to be aware of this risk for the rest of her life.
She needs to be aware of the association with other diseases such as Lupus and Rheumatoid Arthritis, in addition to type I diabetes. She also needs to know that this tends to be hereditary.
If she really does have proven celiac disease, then strict adherence to a gluten free diet is imperative.
Short answer: yes, the biopsy is highly recommended.
THIS get tested, get tested, get tested! As an autoimmune disease sufferer myself, I knew I was at risk for gastric problems and other AI diseases, if she gets a concrete diagnosis that opens up a lot of doors for her in the way of treatment (diet, which you're doing) and continued education, and will give her and parents a heads up that other autoimmune diseases may show up later in life. Symptoms often start off small and by the time you realize that something is "truly" wrong its gotten bad and hard to control, as has been my experience. I'm up to three different autoimmune diseases  For me, having Lupus and RA, I got further testing and found out it is hereditary as I have the genetic marker for it (I think I'm explaining this right)
The celiac test is scary, but honestly not as bad as expected and totally worth it to know for sure what she's dealing with. Other symptoms of Celiac disease may crop up over time and it would be invaluable to know if she truly has it... Some of those symptoms cross over with other autoimmune diseases, other regular illnesses, and even some types of cancers so for me it was important to know for sure what was going on so I could properly treat with medication if necessary or just move forward with diet control.
ETA: depending on what is going on, I know in my case when I get sick and need medication or treatment for anything from a sinus infection to flu my doctors make med changes based on what diseases I have, how I'm able to control them, and what other medications I'm currently on. I know it doesn't directly apply for the most part to celiac disease but it is another important consideration.
Edited by redmansmyman11 2016-09-27 12:52 AM
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Industrial Srength Barrel Racer
Posts: 7268
| I work with a guy who has it, so I hear about it daily. He CLAIMS he can't even lick an envelope with adhesive that was made with a wheat product. He also is terrified of "cross contamination" thus can't/won't eat out anywhere ever because he doesn't trust that food prep areas are kept separate.
It would be a life-altering disease in that so much of our socializing is done around food. If I were her parents, I would have her tested. I would want to know for sure.
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Born not Made
Posts: 2937
Location: North Dakota | Griz - 2016-09-27 5:25 AM I work with a guy who has it, so I hear about it daily. He CLAIMS he can't even lick an envelope with adhesive that was made with a wheat product. He also is terrified of "cross contamination" thus can't/won't eat out anywhere ever because he doesn't trust that food prep areas are kept separate.
Sorry his medical problem has to "inconvenience" you.
Okay, maybe you did not mean your post the way it sounds and comes across to me, but yes he's right. Gluten is stuck into SO many different things -- including adhesive on evelopes. And some people are seriously sensitive to it where they will get sick even if they are exposed to a very, very small amount.
In general, even if you don't feel sick from being exposed to small amounts gluten (everyone with Celiac has varying levels of sensitivity), as others have mentioned, damage is still done to the intestines.
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Balance Beam and more...
Posts: 11511
Location: 31 lengths farms | What exactly does the stomach biopsy entail? Thinking I have a really good relationship with her and maybe I could talk to her about it in a way that helped with the fear of it and help her thru the testing process.
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BHW Resident Surgeon
Posts: 25352
Location: Bastrop, Texas | run n rate - 2016-09-27 10:31 AM
What exactly does the stomach biopsy entail? Thinking I have a really good relationship with her and maybe I could talk to her about it in a way that helped with the fear of it and help her thru the testing process.
Sedation. They pass an endoscope into the stomach and take tiny biopsies of the lining. It's a very safe procedure that's been around for over 50 years. No pain afterwards. Google: upper GI endoscopy and biopsy. |
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Industrial Srength Barrel Racer
Posts: 7268
| r_beau - 2016-09-27 10:13 AM
Griz - 2016-09-27 5:25 AM I work with a guy who has it, so I hear about it daily. He CLAIMS he can't even lick an envelope with adhesive that was made with a wheat product. He also is terrified of "cross contamination" thus can't/won't eat out anywhere ever because he doesn't trust that food prep areas are kept separate.
Sorry his medical problem has to "inconvenience" you.Okay, maybe you did not mean your post the way it sounds and comes across to me, but yes he's right. Gluten is stuck into SO many different things -- including adhesive on evelopes. And some people are seriously sensitive to it where they will get sick even if they are exposed to a very, very small amount.
In general, even if you don't feel sick from being exposed to small amounts gluten (everyone with Celiac has varying levels of sensitivity), as others have mentioned, damage is still done to the intestines.
That's not how I meant it AT ALL.
I MEANT that gluten is EVERYWHERE - in stuff you wouldn't even CONSIDER.
Sorry you got the VERY wrong impression. |
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Industrial Srength Barrel Racer
Posts: 7268
| Bear - 2016-09-27 10:59 AM
run n rate - 2016-09-27 10:31 AM
What exactly does the stomach biopsy entail? Thinking I have a really good relationship with her and maybe I could talk to her about it in a way that helped with the fear of it and help her thru the testing process.
Sedation. They pass an endoscope into the stomach and take tiny biopsies of the lining. It's a very safe procedure that's been around for over 50 years. No pain afterwards. Google: upper GI endoscopy and biopsy.
I asked the guy here at work and he said it was a very easy, non-painful process. |
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Balance Beam and more...
Posts: 11511
Location: 31 lengths farms | Yes, I was reading that even shampoo and lotion has to be looked at carefully....
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  Whack and Roll
Posts: 6342
Location: NE Texas | No advice or suggestions, but just wanted to offer my thoughts and prayers to this young lady.  |
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