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SarahAnn92

A Few Questions

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I'm turning 18 in a couple weeks, and I have been gluten free for almost a year(in April it will be a year). It was found that I have Celiac Disease. It was found during an endoscopy when the doctor noticed my villi was flat, and a blood test confirmed it.

Back when I was 13, I lost weight down to 64 lbs(I'm fine now, I weigh 133), and I ended up having to get an ileostomy(which I still have). I've always had problems with my GI tract/system. I have juvenile polyposis, and HHT(hht.org for more info). When I was 9 I had to have my colon removed because there was 100s of polyps in it. I had a J-Pouch put in(not an ileostomy). It worked fine for a few years, but then at age 12/13, I lost down to 64 lbs, I couldn't force myself to eat anything(even the thought of food made me want to vomit), I couldn't keep my poop in. The doctors couldn't figure it out. I noticed that poop was leaking out of my vagina area. My dad dismissed it at first, but then it was discovered by a nurse who was putting in a catheter. I then had the ileostomy put in. It was discovered that fistula was the cause of all this!! I'm fine now, and my celiac wasn't discovered until a couple years after that, but I'm just wondering if it's possible the cause of all the stomach issues could have been caused by celiac? I had been eating wheat my whole life(17 years) before it was discovered. I now throw it up if I eat anything with wheat.

Thanks for reading all this lol

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I'm turning 18 in a couple weeks, and I have been gluten free for almost a year(in April it will be a year). It was found that I have Celiac Disease. It was found during an endoscopy when the doctor noticed my villi was flat, and a blood test confirmed it.

Back when I was 13, I lost weight down to 64 lbs(I'm fine now, I weigh 133), and I ended up having to get an ileostomy(which I still have). I've always had problems with my GI tract/system. I have juvenile polyposis, and HHT(hht.org for more info). When I was 9 I had to have my colon removed because there was 100s of polyps in it. I had a J-Pouch put in(not an ileostomy). It worked fine for a few years, but then at age 12/13, I lost down to 64 lbs, I couldn't force myself to eat anything(even the thought of food made me want to vomit), I couldn't keep my poop in. The doctors couldn't figure it out. I noticed that poop was leaking out of my vagina area. My dad dismissed it at first, but then it was discovered by a nurse who was putting in a catheter. I then had the ileostomy put in. It was discovered that fistula was the cause of all this!! I'm fine now, and my celiac wasn't discovered until a couple years after that, but I'm just wondering if it's possible the cause of all the stomach issues could have been caused by celiac? I had been eating wheat my whole life(17 years) before it was discovered. I now throw it up if I eat anything with wheat.

Thanks for reading all this lol

My son also turns 18 in a couple of weeks too. And he also has had a medical journey etc...and it is likely the problems u have were because of the Celiac's because it can cause damage to the stomach and bowels, but I am just a newbie to learning about Celiac. My son has just learnt and being prepared that he may too have a gluten intolerance along with a dairy intolerance, so he is preparing that changes again are going to have to be made. He lived a very strict diet for many years and then had a couple of years where he could eat normal again. And he still has some health issues too. We just ordered some really lovely cook books before we found out about me having a gluten intolerance, and they came today and so it looks like those cook books have to go back.

Peace 4 1

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Sad to say, but it is very possible that celiac caused all of your problems. Undiagnosed, a lot of damage gets done. The body begins to attack itself, which could very well be what happened to you. In me, my joints were attacked. In my mom, her entire intestinal tract was attacked.

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Wow. You are a trooper! You have been through so much!!!

It is possible that celiac caused these other problems. It is also possible that you simply have had multiple, related conditions. Celiac (untreated) increases our risk of other problems, particularly autoimmune ones and/or digestive ones.

I am so sorry for all you've had to go through. I hope you have a sturdy support system walking with you through this journey!

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You have been on a pretty devastating journey in your short life so far. May the rest of it it be easier for you. There is no way of knowing how much gluten was a contributor to your problems, but it is certainly a possibility that it did play a part, as the others have stated. It is interesting that all of your medical conditions are or can be genetically predisposed, including the celiac disease. Do any of your other family members have any of these conditions?

You are a strong young woman to have come through all this. May life be kinder to you in the future. Any help we can be to you with the gluten free diet, just let us know.

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Thanks everyone!! :)

And no, strangely, I'm the only one in my family(at least that is known) with any of these diseases.

Hi,

Celiac can cause lots of damage when untreated by the gluten-free diet. So it would be a good idea to learn about eating gluten-free and other possible food intolerances. Lots of us have secondary food intolerances like soy, or corn or egg etc that can affect us almost as badly as gluten in some cases. Soy is one of the worst things for us IMHO.

Mayo clinic top 8 list

* Milk

* Eggs

* Peanuts

* Tree nuts (such as almonds, cashews, walnuts)

* Fish (such as bass, cod, flounder)

* Shellfish (such as crab, lobster, shrimp)

* Soy

* Wheat

One of the best ways to start the gluten-free diet is not eat any processed foods for a few months at least. Eat all home cooked meals from whole ingredients instead. No boxes or cans of foods with preservatives and food colorings added etc. Rice or quinoa is a good base for adding veggies and meats to for a meal.

Another helpful thing to consider is an elimination diet, where you start with just a few foods, maybe 5, and slowly add new foods to your diet. The idea is to simplify your diet to the point you can detect problems caused when you add a new food. So you would typically add one new food every 3 days and record your reactions in a food journal. When you hit an issue food, you eliminate it from your list of good foods.

You might also have Crohn's. Crohn's is usually treated with immune system suppressant drugs. But some Crohn's people find the gluten-free diet does help them also.

Mayo Clininc again:

quote

While there's no known medical cure for Crohn's disease, therapies can greatly reduce the signs and symptoms of Crohn's disease and even bring about long-term remission. With these therapies, many people with Crohn's disease are able to function well.

unquote

My younger brother had both Crohn's and celiac. They gave him prednisone, but never tried the gluten-free diet. There are newer drugs for Crohn's now though that was 20 years ago.

Another thing you might want to consider is getting some gluten-free vitamins. They sell some on the main page for this site. One commonly recommended one is liquid B-12. Vit D, K, magnesium and calcium may also help. Some people say L-GLutamine can help repair intestinal cells also.

There is also an enzyme called DPP-IV that can help a little with gluten.

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    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
    Got the result today, and it is indeed the IgG only, and it is "negative" with a result of: <10.0 Units I have sent a message to my doctor requesting that she at least also order the TTG IGA test. However, I'm assuming that this result does at least significantly lower the likelihood that I have celiac? This is all just a shot in the dark anyhow... but after 8 years of unsatisfactorily diagnosed mystery joint pain, I don't want to only half-explore an option and then abandon it without a reasonably definitive result.
    It sounds like you were not given the full celiac panel. The full celiac panel includes: TTG IGA
    TTG IGG
    DGP IGA
    DGP IGG
    EMA
    IGA You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.    
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