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Newly Diagnosed
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I have just been diagnosed with celiac disease. I had no idea this disease could cause so many problems and symptoms. I have previousely been diagnosed with fibromyalgia, IBS and Hoshimotos hypothyroidism, and had recently changed doctors because I was disatisfied with the level of care I was getting from my PCP.

I was told when I made the appointment with my new doctor to fast because she always likes to do a seriies of blood panels on all her new patients. After meeting her and giving a brief medical history, she told me she thought I could be gluten intollerant and the blood tests she was running would find out.

Sure enough they came back possitive for gluten intolerance, pre-diabetes, high colesterol and my Hoshimoto's was in flare.

After I spoke with her in her office, believe it or not, I actually felt very possitve, because now I had something that I could actively do to feel better and I wasn't just given a handful of perscriptions and shoved out the door.

I also remember that my mother (she passed away 10 years ago) had Celiac disease. She was in her sixties before whe was ever diagnosed, and very very sick. I remember she had all sorts of symptoms her whole life, like anemia as a child, hairloss when she got older, lots of dental problems, infact she lost all of her teeth in her early twenties. Two years before she died she had to have emergency surgery for severe abdominal pain, and they removed several feet of her small intestines whch had gangrenous.

I am just 40 now and very greatful that I am able to do something to get well. Back in January I had started a low carb diet, on which I imediatly noticed how much better I felt, and now realize it was because I was not eating any bread products.

I am greatful that I am already in the habit of avoiding bread, but now need to refine it to a much greater degree.

Any help or encouragement would be appreciated.

thanks,

Betsy

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Welcome Betsy! :D

Sorry to hear of your health problems and your mothers passing. It is good that you were on the low carb diet and could recognize you had a problem with bread and that you know that a gluten-free diet goes much deeper than just bread. It may seem overwhleming at first but it does get easier, especially when you see a difference in your health! I know for me after being gluten-free for a few days my abdomainal pain was gone!

Here are some links listing other ingredients we have to look for that go above and beyond, wheat, rye, etc.....

Mainstream gluten-free products

Safe and forbidden food and ingredient list

This site is an awesome place for support, encouragement and lots of helpful information. Take care & God Bless

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Hi elf! Welcome. I've been gluten-free for 3.5 months and can say that the first 3 months are the "period of adjustment" and it gets easier! I'm glad you found a good doctor to work with you. There's so much to learn and I suggest looking for and joining a local support group as well as checking in here regularly. Best wishes to you!

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Hi, my name is Sonja and I have just been diagnosed with having a gluten allergy. Initially I tried to deny it because I was not the typical patient. Eveything I have read indicates that most peolple with Celiac or Gluten Allergies are very small and have problems gaining weight due to malabsorption of nutrients. Well, I have just the opposite problem. I am overweight. But after reading some of the messages from the board, I am 100% positive I have gluten allergies. I have only been on a gluten free diet for a week( not sure if I have been 100% gluten free). Its very difficult since I considered myself a carb addict. I find myself graving more and more for things I can't have. I am also very depressed. I want to know how long does it take to really feel better and adjust to this change of life? I am :( really trying, but it is very difficult. Any suggestions would be appreciated.

Sonja :(

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Stick to the diet, read ALL labels! It takes anywhere from 3 weeks to 3 years, depending on the level of damage your body sustained. Keep reading the board, and asking questions. Be patient with your body, and smile, things will get better from here!

BTW: we are doing a campaign to get Oprah to do a segment on Celiac Disease, so please e-mail her! I think the website is www.oprah.com.

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I looked back and the site is www.oprah.com/

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I have recently (2 weeks ago) been diagnosed w/ celiac disease. Am reading all I can on this site to help me understand the symptoms - which I believe my siblings and my mother are suffering from - for YEARS!

Am I understanding this correctly - that there is a correlation between Hoshimoto's Disease and celiac disease? My sister has Hoshimoto's Disease and I forced her to get her first colonoscopy last week - she has also been suffering from constipation for about 20 yrs now - and her Dr says that she doesn't have celiac disease - although he did not perform a biopsy. (my celiac disease was diagnosed via biopsy results)

I know that eating gluten-free for the past 2 weeks has already changed my life - after taking every IBS drug on the market - with short-lived to no success - my body is already starting to function like a "normal" person! I feel like a new person!

Any information in helping me help my loved ones is greatly appreciated!

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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