When Were You Diagnosed? As A Child?

[livingglutenfree]

I am new here and have been reading through many posts. I am finding all of the information very helpful. (I should have joined sooner!). It appears that many of you have been diagnosed as adults after years of suffering from various symptoms. My story is much different - diagnosed at the age of 13 months. I believe I started getting sick around 7 months. At first the doctors dismissed my mom's concerns as being a "nervous" mom and said nothing was wrong. But as I continued to get sicker, they could no longer ignore the symtoms. My parents were thankful for the diagnosis and although they knew this was going to be another huge adjustment (my Dad had been diagnosed with Diabetes 6 months earlier), it was definately a better diagnosis than the other child sharing my room. (she had cancer).

After reading many of the posts here, I am very thankful that I was diagnosed so young and only suffered symptoms for a short time (5 months or so). I know this was a very difficult and scary time for my parents, but of course it is not something I remember at all. I was faced with many difficult challenges as a child who had to follow the strict gluten-free diet, yet I have never known anything else. I don't compare my gluten-free foods to regular foods because I have never had gluten contianing foods. Like when I am eating gluten-free pizza, someone will ask - does it taste like regular pizza? My mom used to be the taste tester (to compare foods) and now it is my husband!

So out of curiousity.....Were you diagnosed as a child or an adult?

Also, how long have you been eating gluten free? I'm 28 so I have been eating gluten-free for about 27 years!!!! Gluten Free foods have defintately gotten better in taste over the years. (especially the pasta...did not like as a child!)

[ang1e0251]

I was self diagnosed at age 50 and have been gluten-free for a year. I can look back over the years and see that I had symptoms but who knew?

I agree you are lucky to have had an early dx to avoid so many years of damage.

[YoloGx]

I was originally diagnosed as an infant at age 4 or 5 months after I got pneumonia and was failing to thrive--which meant I stopped growing. I was unfortunately put back onto gluten at age four and kept on it since it no longer stopped me from growing. The fact it made me weird and ill didn't seem to phase or get noticed by anyone.

I finally figured out what "failure to thrive" meant last year on celiac.com since I had long been told that I did have that as an infant and was put in isolation for it. I thought it was due to exposure to radiation from Hanford Nuclear Power Plant's series of radioactive releases -- which I am certain didn't help in any case. However failure to thrive means being exposed to grains and having a case of classic celiac sprue wherein one stops growing as an infant.

Roughly 12 years ago I finally figured out I probably had celiac by looking at the Merck Manual. However no one confirmed this except for me. I went on a more strict anti gluten diet. I had already figured out as a young adult I shouldn't eat wheat, rye and barley for the most part after almost dying from recurring kidney inflammation and then infection from eating these grains, but had started to eat oats at night in my mid forties to help me sleep since they always made me feel sleepy.

Finally I got really shaky and was trying to figure out what was going on. It was suggested by a naturopath that I might have leaky gut syndrome, especially since by then I was allergic to so many various foods. However after I read the Merck manual, I thought it was celiac instead. By avoiding gluten as best as I knew for three months, my fingernails and teeth finally got stronger, plus I was less shaky which I took as a good sign. So I stayed off most glutens, but continued to use tinctures and have other medications now and then that had gluten in them plus now and then had a cookie. No one told me I shouldn't, and in fact my doctors would often give me medications that had gluten in them.

I thus still continued to struggle with my health, namely my nerves and joints as well as getting colds and bronchitis frequently and for far longer than most anyone else, and gradually an increasingly rattly heart as well as increased pain in my legs and feet compounded by an old childhood injury to my sacrum and L-5 vertebrae. Feelings of transient desperation became commonplace. Detoxing using a naturopath's gluten containing substances didn't help.

It wasn't til a little over a year ago however that I went off all trace glutens after my eldest sister told me she had had such good results doing so -- and I could see that she had since she no longer had her "fibromyalgia" she had had for many years and was able to do heavy duty power sanding on a house without a problem. So I joined celiac.com and suddenly discovered what trace glutens were plus cross contamination. Since then I have overall been so very much healthier plus my joints also feel much better and my old headaches have gone away plus my heart no longer races (I also take country life co enzyme B vitamins to help with my nerves).

So I am usually pretty healthy now except of course for cross contamination episodes. Boyfriends are the worst. I think I have covered all my bases but then discover I haven't.

I also have found I have to be careful at work since we use wood-fill and fix-all and work sometimes with sheet rock, all of which has gluten in it. We have replaced pre-mixed plaster with plaster we prepare ourselves. We also now are careful when we cut plywood which also has gluten in it. And when I have to be around any fresh glues I use a heavy duty mask...

I think that the fact I have had this problem all my life has made me more sensitive not only to gluten but also to a variety of food sensitivities and allergens. At times I am really angry with my mother who should have known better since our family doctor had warned her back in 1949 and 1950. He was a doctor transplanted to a small desert town from the Mayo clinic.

My mom in fact had and still has as it turns out the same condition, however she is less obviously affected since she was taken off all glutens plus potatoes as a child through her teens. However she believed one "grew out of it" as a number of her generation really believed they did. Plus since she never obviously suffered from it beyond her early childhood she had no real memory of how bad it could be. Instead it made her slightly schizo and gave her problems with her eyes and joints on occasion and now increasing dementia and DH. She thought her mother was crazy for being so strict about her diet it appears -- which is also what her father thought. She thus probably was thinking she was protecting me from what she calls my "over active imagination." !!

Half my family thinks I am nuts, however I would rather be healthy than "fit in" and ignore the real cause of my various past ailments. I have found I still can get sick with the flu, but usually I am now much more resistant except when I have been CC'd. Then I have to be really careful, as in now since I finally got the flu after my old boyfriend who was visiting kissed me on Friday. I asked him to brush his teeth first, he did, but did not rinse afterwards! Idiocy, eh? I then finally came down with this bad throat cold/flu my older brother has been traipsing around the house with without really taking care of himself for the last 2 and a half weeks. I just discovered he's been living on cheese, which doesn't do much for getting rid of congestion. He has been staying here in the guest room of late. It wouldn't be so bad except I really don't like being sick at all, as most of us don't. Honestly I have already had more illness in my life than anyone would ever desire. It was/is a piece of thoughtlessness on both counts (the boyfriend and the brother) I can do without -- not to mention my continued crazy and inconsiderate family. Instead of apologizing or trying to be helpful they blame me for being so sensitive.

I personally wonder how many others have similar experiences since it really was thought one "grew out of it" and that celiac sprue was comparable to childhood allergies.

[oceangirl]

Hi Livingglutenfree,

It only took me 35 years and the 6th gastroenterologist to correctly diagnose my intestinal issues. They started in earnest when I was eleven. I was mostly healthy but would go through periods that were miserable and they always ran all those lovely upper and lower GIs and came back saying I either had colitis or IBS.

Then in 2005 I got salmonella poisoning and never got well. Things got very bad; I was pretty sure I was going to hear something dire when I finally caved 9 months and 10 lbs later (I don't need to lose weight...) and went to another gastro in Portland who asked if I'd ever been tested for celiac. Lo and behold...

I also had scoliosis and soft teeth (lots of cavities)as a young girl and had to correct my spine through 9 years of physical therapy... I wonder about that now.

I tell ANYONE who has any unexplained gastro issues to INSIST on a full celiac panel.

Glad your Mom found the right doctor when you were little...

Take care!

lisa

[MELINE]

diagnosed 29 years old, gluten free for 1 year.

Meline

(lucky you!!)

[ravenwoodglass]

I started having symptoms at age 4 but wasn't diagnosed until I was 46. I was severely ill for the last 15 years and saw hordes of doctors. Oh how I wish I could have been diagnosed sooner, then they might have at least looked for it in my children. My son could have been a poster child for celiac but they never even tested him until after I was diagnosed. When my DD had symptoms starting in middle school she was never tested either, in fact her ped threatened her with the 'horrible and painful' tests that a GI would do on her if she didn't stop complaining about having stomach pain. Both children were promptly diagnosed within 6 months of my diagnosis when they finally did a blood test and then an endo on my DD.

[tarnalberry]

Not sure when symptoms started, but I'm pretty sure it was adult onset, probably around 23. I was diagnosed at 25, and have been gluten free since.

[lovegrov]

Age 46. My father at age 70.

richard

[Welda Johnson]

I am age 64 and have had symptoms since age 8, though, of course, doctors never mentioned Celiac Disease. My symptoms presented as asthma, bronchial infections, pneumonia, colitis, an ulcer, anxiety, and depression. I began eliminating foods in my 30s, after allergy testing and shots that didn't work. I started with grains, then milk & dairy, and eventually egg whites, yeast, casein, whey, maltodextrin, modified food starch and msg. In my late 40s, while having a colonoscopy, the nurse attached a name to these symptoms, and she called it Celiac Disease. That's when I learned more, got more stringent with my diet, and began to have improved health. Now I eat mainly fruits, vegetables, legumes, and every now and then a little turkey, chicken or fish. Hope you're doing great. Welda

[psawyer]

My endoscopy was done just before my 46th birthday. I got the results two days after my birthday. I deliberately chose not to have the follow-up appt on by birthday, as was originally offered.

I had had obvious symptoms for at least five years, but there were other things going back into my childhood that I now realize could be related.

[jerseyangel]

Diagnosed at age 49.

20 years too late

[MaryJones2]

I was diagnosed at 32 but recall having what I now know were symptoms as early as 12. I was in and out of doctor's offices for years with seemingly random complaints before someone thought to test for celiac.

[kbtoyssni]

Mild symptoms began at age 15.

Major symptoms began at age 22.

Self diagnosed at age 23.

[nasalady]

I've had "stomach problems" since I was a baby. Of course then they called it "colic", and they discovered I couldn't drink cow's milk, but no one ever thought about celiac disease. Later, when I was in my 20s, I was told I had IBS. I developed a few miscellaneous autoimmune diseases, like asthma and psoriasis and Hashimoto's thyroiditis by the time I was 30 or so. But no one (including me) thought anything of it.

I thought that was it....I thought that everything was under control. Until about a year and a half ago...I developed blurry vision, ataxia, hand tremors, severe muscle cramps, muscle stiffness, brain fog, allodynia, and back pain so bad I ended up in a wheelchair. Plus LOADS of other symptoms I won't bother to list.

Long story short....in 2008, in less than 6 months time, I was diagnosed with fibromyalgia, rheumatoid arthritis, autoimmune hepatitis AND celiac disease. The process of diagnosis started last June, and I had to see 6 different doctors before they figured it all out.

My 53rd birthday was in November. I believe that I've had celiac disease since I was a child. It would explain a lot.

[mushroom]

Stomach cramping with cereals in high school.

Major reactions to corn starting at 29.

Lactose intolerance at 52.

Stopped eating pasta at 60.

Self-diagnosed at 67.

Also intolerant to soy and nightshades.

Also have psoriatic arthritis, diagnosed at 63, which is what led to my self-diagnosis of celiac.

Long-term incorrect diagnoses of fibromyalgia and IBS. Nobody ever suggested celiac.

[MollyBeth]

I was just diagnosed with biopsy this last October. I've had digestive issues my entire life...I can remember going to bed and having heart burn when I was like 4. I started taking ritalin for ADD when I was 11 and took it, or some version of it, until I was about 20 when I could no longer handle the side effects. I think my intestinal issues became most noticable after I had mono when I was 15. When I was 17 I have my first blood test that showed I was extremely anemic. I took iron supplemets that did nothing but make me sick for a few years. I had my first endoscopy when I was 19. Those results showed I had H. Pylori ut no intestinal biopsy was done then. When I was 22 I started having problems with what I would always call "dizzy spells" (vertigo) and had severe headahces. When I was 23 I started seeing a therapist and taking pills for severe depression. Then this summer (age 25) I started going to a new doctor after moving and she tested my blood and became very alarmed by my low iron and other nutrients that weren't in my blood. I told her I was anemic and that my iron levels were always that low. Then for the first time in my life she explained to me that anemia is a symptom, not condition and that I probably had Celiac Disease! After my blood test came back negative I was pretty disappointed because I thought I had finally found what was wrong with me... but again my awesome doctor explained to me that false positives happen sometimes and encouraged me to get the biopsy. Sure Enough the biopsy came back positive, I went on the diet and I have more energy than I've had in my entire life now!

[YoloGx]

I've had "stomach problems" since I was a baby. Of course then they called it "colic", and they discovered I couldn't drink cow's milk, but no one ever thought about celiac disease. Later, when I was in my 20s, I was told I had IBS. I developed a few miscellaneous autoimmune diseases, like asthma and psoriasis and Hashimoto's thyroiditis by the time I was 30 or so. But no one (including me) thought anything of it.

I thought that was it....I thought that everything was under control. Until about a year and a half ago...I developed blurry vision, ataxia, hand tremors, severe muscle cramps, muscle stiffness, brain fog, allodynia, and back pain so bad I ended up in a wheelchair. Plus LOADS of other symptoms I won't bother to list.

Long story short....in 2008, in less than 6 months time, I was diagnosed with fibromyalgia, rheumatoid arthritis, autoimmune hepatitis AND celiac disease. The process of diagnosis started last June, and I had to see 6 different doctors before they figured it all out.

My 53rd birthday was in November. I believe that I've had celiac disease since I was a child. It would explain a lot.

Wow! I hope you get better soon! Do try some of the herbs I suggested. They really might help. Stay away from anything however that is an immune stimulant.

Bea

[livingglutenfree]

Wow, thanks for sharing your stories with me. Again, it confirms my thankfulness for having an early diagnosis and not having to suffer from so many symptoms like many of you had. I only wish you could have been spared all of your pain with an earlier diagnosis.

Has anyone ever seen statistics compairing age of diagnosis - child vs. adult?

I am trying to increase my understanding of this disease. So for those of you who had adult onset - no symptoms as a child - do you believe that the gluten you were eating before showing symptoms was causing damage but you just weren't having outward symptoms? Or is the belief that your body all of a sudden can't handle the gluten.

[ang1e0251]

I didn't have childhood digestive problems but I did have terrible teeth. I had fillings in nearly every baby tooth. I had just about perfect total recall until I hit about 5th grade then suddenly I had to work harder in school and that bacame much tougher the older I was. I always linked it to puberty but now I wonder if brain fog was a big thing. I started having seasonal depression in the winter.

About 16 or so I was lactose intolerant but it another 3 years or so to learn what that was. I went dairy light and had milk through my first pregnancy. Then I really put it together & stopped all fresh dairy by age 24. After that "other stuff" was cropping up but I had no clue and neither did my dr's.

Put it all together myself last year at age 50 and I feel better than I have for probably 20 years.