When Did You First Start Noticing Symptoms?

[fnord]

First of all, if there are similar threads related to this please link me - I'd like to read them.

This is a personal interest in the rather recent acknowledgement and surge in wheat allergies/Celiac disease and I have a few questions.

I understand that it has taken the sands of time to finally determine the exact cause of the symptoms of wheat allergy/Celiac, as with many ailments and diseases. At the same time, it seems like in the past 5-10 years it has become more and more common now that it has a name. Whether it was as common in the past, I don't know, but that's kind of what I'd like to learn about.

For those of you who developed a wheat allergy/Celiac later in life - during what year do you think it started and how old were you? What were your initial symptoms? Did you ignore it until it got worse and worse?

For those who have had a wheat allergy/Celiac your entire life - how old are you? Or during what year was it finally determined something was definitely wrong and it was probably diet related?

I began having wheat allergy/Celiac symptoms starting in 2005 at age 30. Thinking back, it was rather sudden. I'd consumed wheat products for 30 years with no ill effects whatsoever and suddenly things changed. It took me three more years to finally acknowledge the problem and pinpoint what I think is the cause. In the past year or so, a few friends of mine (of different ages) are also describing concern over gluten intolerance after eliminating gluten from their diets and seeing a huge improvement.

My interest is in WHY this is happening. It happened to me at age 30, it happened to friends of mine at age 35 and age 45. All within the last decade. Just looking for facts, data, and individual stories.

Thanks.

[caek-is-a-lie]

I'm 32 and was just diagnosed a few months ago. But it was not sudden. I've had this all my life. Pancakes always made me sick and everyone told me I was crazy because of course pancakes don't do that to people. I remember being really young growing up in New England where maple syrup is king and being scoffed at because the pancake breakfasts put me off. In high school I had panic attacks in the afternoon after eating my sandwich for lunch and they just called me a stressed-out overachiever. I hated sandwiches but my mom always made me eat them because they were cheap. Cake always made me feel funny and bloated after eating it and I thought this was a normal feeling because it happened my whole life. Fatigue, confusion, feeling embarrassed or weird to be human. D and pain was normal, panic and depression was normal, fatigue and paralysis was normal. I thought I was going to die! So now, at 32, I am discovering a world of "real normal", a world that's like another dimension, a world that I can truly live in. Why didn't anyone tell me this awesome world existed before now???

[Roda]

My problems began in Feb. 2006. I was 33 yrs old and was still breastfeeding my then 14 mo. old son (I'm now 36). I started having really bad episodes of tachycardia that landed me in the ER twice. I was worried that they were going to have to shock my heart back into a slower rythym. It came on all of the sudden. It was not caused by my thyroid meds. The bad episodes seemed to go away with only occasional problems with a slightly elevated heart rate. I took medicine for it until May 2006, when quit because I did not like the side effects. After that I was extremely fatigued and tired all the time, my hair was falling out and I was suffering from heartburn/acid reflux. I went to my regular doctor two more times and all they checked was my thyroid and it was alright. By December of 2006 the symptoms were not getting better so I went back to the doctor and basicially told him something was wrong. He asked me if I was depressed and I said I would be if you don't figure out why I feel bad. This time he ran the thyroid (all fine) and a CBC and a complete metabolic pannel. The CBC showed that my hemaglobin and hematocrit (h & h) was low indicating anemia. I asked what would cause the anemia and he told me usually bleeding in the intestinal tract, malabsorption, and heavy menstral periods. He told me likely because of my age it was the latter. He had me take iron pills and was to follow up in three months. Well did in early 2007 and the h & h was normal so I did not need to follow up. Well I still was feeling crappy so I decided to find an endocrinologist for my thyroid. She ran a bunch of tests including iron tests and found my ferritin levels to be really low (5). She adjusted my thyroid meds and had me to try cromagen for the low ferritin. The cromagen made the heartburn so bad I could not sleep. I had to quit taking it. So every four months for the next year I would follow up with her and she would keep a check on the ferritin. Around April of 2008 I was researching iron deficiency and hashimoto's disease and kept getting information linking to celiac. The more I read about celiac the more I was convinced that was what was wrong. I was sort of in denial so I ended up waiting until Sept. 08 to ask my endocrinologist about testing for celiac. She asked if I had any gi symptoms. I had the horrible heartburn and I have suffered with constipation/bloating off and on all my life. She ordered the IgA tTg and it came up positive at 70. I was referred to the gi doctor and had a egd with biopsy in Oct. 08. I got a positive diagnosis from the biopsy and went gluten free the day before halloween.

[happygirl]

https://www.celiac.com/gluten-free/index.php?showtopic=55839

https://www.celiac.com/gluten-free/index.php?showtopic=55108

[quietmorning01]

For those of you who developed a wheat allergy/Celiac later in life - during what year do you think it started and how old were you? What were your initial symptoms? Did you ignore it until it got worse and worse?

I think this has been an issue with me since I was a child, just very misdiagnosed millions of times.

For those who have had a wheat allergy/Celiac your entire life - how old are you? Or during what year was it finally determined something was definitely wrong and it was probably diet related?

I'm 46. I'm in the process of diagnosis, now. They thought I had a bleeding ulcer in the duodenum - but when they did the upper endescopy and biopsy, the biopsy came out positive, and there was no ulcer there. I'm now waiting on the blood tests to confirm.

There has always been something definitely wrong. . . I've been misdiagnosed with all sorts of OTHER THINGS . . .all my life. I've had more RA tests than I can count because my bones have always been so painful. The treatments they've always put me on have always made me incredibly ill all in their own right. I've had to (as an adult) be incredibly diligent in protecting myself from doc's that jump to fast and don't do the proper rule out tests. I've been told many times, especially when the rule out testing WAS accomplished, "There is something wrong - very wrong, but we don't know what it is." And usually a suggestion to donate my body to science is made. Pft.

The doctor I'm seeing now is very good. I'm glad he's doing all the appropriate testing. I started gluten free living, and the difference is incredible.

My interest is in WHY this is happening. It happened to me at age 30, it happened to friends of mine at age 35 and age 45. All within the last decade. Just looking for facts, data, and individual stories.

If you understand the immune system and how it works, it really doesn't seem so odd that you would go all of your life without any effects then suddenly become allergic. The immune system has a warning system built into it that's qued with the autonomic nervous system. If the alert is sounded - and anything can sound this alert. . .stress, surgery, a bad viral or bacterial infection. . .then the pathway to the alert is formed, it's very difficult to re-program it. Viruses, especially can mimic the 'look' of different proteins that are safe ingested by the system. Once you have an immune response to that virus, and that virus has a protein picture of another protein, the body isn't going to discern between the two. It's going to be safe and knock out everything that even remotely resembles it. Stress totally wacks out everything, anyway. Stress is very hard on the immune and nervous systems. Surgery and childbirth as well. Pregnancy itself over inflates the immune system. . . first thinking the embryo is foreign, then pumping itself up to protect the baby as it grows.

A missed response in an immune system can really do a lot of havoc as the next time it figures things out it goes way out and overdoes it. But like I said, once it's done, it's very difficult to undo - if not impossible.

Hope this helps.

QM

[fnord]

Thank you all for the responses and for the links provided - I read through all of those.

It sounds like age of diagnosis and the onset of symptoms is all over the place; some have had this since childhood, others have had it start in their 20s & 30s after never before having problems with gluten (like me, I think).

I'm still curious over the possibility that "something" has entered the food chain or water supplies in the past decade or so to cause sudden gluten intolerance in some people who never had issues before. Any other speculation on this?

[fnord]

Thank you quietmorning01, I just saw your post after posting mine.

No, I don't understand the immune system and how someone can suddenly become "allergic" to something that never bothered them before. I will research more about that.

Thanks.