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Not Officially Diagnosed, But The Symptoms Fit


lucy lou

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lucy lou Newbie

I'm a newbie and not a computer queen so please bear with me. Was wondering if anyone out there has heard of someone developing gluten and lactose intolerance later in life brought on in part by stress? Also, is it possible since my one test was negative it was a false negative as I had already cut out most all gluten and dairy. Thought I was on the right track, but seem to have a relapse since a month of major stress at work again.


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Ivanna44 Apprentice
I'm a newbie and not a computer queen so please bear with me. Was wondering if anyone out there has heard of someone developing gluten and lactose intolerance later in life brought on in part by stress? Also, is it possible since my one test was negative it was a false negative as I had already cut out most all gluten and dairy. Thought I was on the right track, but seem to have a relapse since a month of major stress at work again.

Hi Lucy Lou,

First off, Welcome to the forum boards. :)

I, myself am 44 years old, and just finished this year, going through what was probably one of my more stressful times. I am just 2 months in now, into the gluten-free lifestyle, by doctor's orders. I don't have an official celiac diagnoses, but through blood work tests and dietary responses, my family doctor, feels 98% sure that I am gluten intolerant. She wants me to continue the gluten-free diet for another 2 months, then retest the blood work to see if some factor #s go down.

I don't think anyone "truly" wants to be gluten intolerant or lactose intolerant for that matter. It's extermely hard at times to deal with the "no more" for life factor. Especially as they (gluten and lactose) seem to be in so much food/ and everyday items. Gluten is also found in things like shampoos, lotions, makeup etc. But, you may already be aware of that. :)

There have been a quite a few people whom are lactose intolerant in addition to the gluten intolerant or celiac, something to do with the lactose intreferring with the "healing" that happens when the gluten is removed. I've seen some postings that state, that some people have to remove lactose too, they are able in most cases (I think) to add it back in later on, after a few months of being gluten-free . However I am by far, no, medical expert on it. I'm just a lady, whom is dealing with being newly diagnosed as needing to be on the gluten-free diet. As for the false negatives, there seems to be a # of people here, whom either show negative results, or simply can't get their doctors to "even" test for the possiblity of celiac or gluten intolerance. :angry: I think you need to simply ask yourself. Do you physically and or mentally, feel better? It's your body, you would know if gluten or lactose affects it and makes you ill.

I hope some of the "stress" factors in your life, deminish, none of us wants stress.

hugs.

  • 2 weeks later...
pele Rookie

Hi Lucy

I'm surprised therre haven't been more replies to your questions. Are you still checking in and reading this?

Yes, you can develop celiac later in life. There is a great one hour video on youtube.com that says the most common demographic being diagnosed are women in their 40s and 50s. If you go to You Tube and search celiac disease you will find this video from U of Calif. It is well worth watching. I also recommend the book Celiac Disease, A Hidden Epidemic by Dr. Peter Green, and check out Dr. Kenneth Fine's enterolab website. By the time you have read through the book and website two or three times, you might know more than you doctor about gluten intolerance and celiac disease.

Dr. Fine says the best diagnostic tool is seeing improvement on a gluten-free diet.

Good luck and write again.

lucy lou Newbie

Thanks so much for the great information, pele! I have been sort of discouraged, but still read as much as I can on the forum page even though I've heard only from a couple people. I've continued the quest for more education on the subject and have certainly learned alot at this site. I sure appreciate your response.

Welda Johnson Newbie

Hi Lucy Lou,

I'm a 63 year old female who has had symptoms of Celiac since age 8. In the 1960s I had asthma so bad the doctors said I would probably be bedridden by the age of 25, so I had scratch tests for allergies and shots for the next 3 years. Little improvement. In the 1970s I finally started doing my own elimination tests of foods, since I had spent so much money already on doctors and specialists. I breathed easier when I cut out all grains, and all milk and dairy products, but I always went back to eating those foods again, and I usually was sick (many hospitalizations followed). In the 1980s I tried to stick to the diet, but kept going back to forbidden foods. I got a breathing machine and took Prednisone and lots of asthma medication each day. By the 1990s I was sticking to the diet better and feeling better. In 2001 I had a colonoscopy (my father died of colon cancer) and the nurse told me the name for my food allergies = Celiac. I got on this site and my life changed drastically.

I learned about casein, whey, maltodextrin, modified food starch, etc. and eventually even cut out eating meats, since I seems to be sensitive to grain-fed animal products. In 2003 I became primary daycare provider for my newly-born grandson and learned all about how to keep children on the diet. I put together a booklet called, "Grandma, Can I Eat this?" and a recipe booklet for Celiacs. I gave my sister, brother, and three grown children Enterolab test kits and learned my sister has it, my brother doesn't, and my kids didn't take the tests. I bought the full-spectrum test kit for my grandson and learned he is intolerant of all grains and all milk and dairy. That test was about $400 but the tests for gluten intolerance only were about $100 each.

I wish you well on this new journey, and want to tell you to please email me at welda@att.net if you'd like more information or have questions. I have been blessed to have this disease, and feel better than ever. Welda Lou

lucy lou Newbie
Hi Lucy Lou,

I'm a 63 year old female who has had symptoms of Celiac since age 8. In the 1960s I had asthma so bad the doctors said I would probably be bedridden by the age of 25, so I had scratch tests for allergies and shots for the next 3 years. Little improvement. In the 1970s I finally started doing my own elimination tests of foods, since I had spent so much money already on doctors and specialists. I breathed easier when I cut out all grains, and all milk and dairy products, but I always went back to eating those foods again, and I usually was sick (many hospitalizations followed). In the 1980s I tried to stick to the diet, but kept going back to forbidden foods. I got a breathing machine and took Prednisone and lots of asthma medication each day. By the 1990s I was sticking to the diet better and feeling better. In 2001 I had a colonoscopy (my father died of colon cancer) and the nurse told me the name for my food allergies = Celiac. I got on this site and my life changed drastically.

I learned about casein, whey, maltodextrin, modified food starch, etc. and eventually even cut out eating meats, since I seems to be sensitive to grain-fed animal products. In 2003 I became primary daycare provider for my newly-born grandson and learned all about how to keep children on the diet. I put together a booklet called, "Grandma, Can I Eat this?" and a recipe booklet for Celiacs. I gave my sister, brother, and three grown children Enterolab test kits and learned my sister has it, my brother doesn't, and my kids didn't take the tests. I bought the full-spectrum test kit for my grandson and learned he is intolerant of all grains and all milk and dairy. That test was about $400 but the tests for gluten intolerance only were about $100 each.

I wish you well on this new journey, and want to tell you to please email me at welda@att.net if you'd like more information or have questions. I have been blessed to have this disease, and feel better than ever. Welda Lou

lucy lou Newbie

Thanks so much for the info Welda. I have been trying myself to stay gluten free and feel better than before, but still am set off by something at least once a week and not sure what. Maybe I need to look into maltodextrin and some of the other things you mentioned. I am very interested in that Entero lab test and will e-mail you with my additional questions. Thanks again!


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  • Posts

    • trents
      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
    • Celiacpartner
      Thanks so much for the responses. I will urge him to go for further investigation. To be 48yrs old and develop a new allergy.. ugh, As if celiac disease isn’t enough! 
    • trents
      This does not seem to be an anaphylactic response but I agree it would be wise to seek allergy-food sensitivity testing. You might look into ALCAT food sensitivity testing.
    • Rogol72
      @Celiacpartner, I agree with Scott. We have a food festival yearly in the town I live in, with artisan food stalls everywhere. I spoke to the owner of one of the artisan burger stalls, enquiring if the burgers were gluten-free when I said I was Coeliac ... he said he had a serious anaphylactic allergy to fish himself. He possibly carries an epi-pen or two everywhere he goes. I would go see an allergist as soon as possible as suggested.
    • Scott Adams
      After years of stable management, developing new symptoms to historically safe foods like nuts and fish strongly suggests a secondary issue has developed. It is highly unlikely to be a new gluten issue if the foods themselves are certified gluten-free. The most probable explanations are a new, separate food intolerance (perhaps to a specific protein in certain nuts or fish) or a true IgE-mediated food allergy, which can develop at any age. The symptoms you describe—cramps and the urge to vomit—can be consistent with either. It is crucial he sees an allergist for proper testing (like a skin prick or blood test) to identify the specific culprit and rule out a serious allergy, as reactions can sometimes worsen with repeated exposure.
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