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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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    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
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