So How Did It Start With You

[Chad Sines]

I was thinking about this topic this weekend when discussing Celiac with friends. How did it start for you, assuming you got it as an adult. Was it WHAM and you got symptoms for the first time. Was it gradual onset. Did it seem that looking back you had it, then did not, then did (you know what i mean, kind of like remission) For me, it seems that looking back I had spells of it and then normal. It is very odd.

I have had GI issues since I was 14. Ulcers, then off and on upper and lower GI stuff. About 5 years ago I had a year spell of constant nausea and vomiting that led to GB out. Was better for a bit except massive IBS stuff after that. Then last year after a few years of normal..whammo. There was a lot of stress happening at the time, moving back to the US, loss of child, school, etc. I was really sick with a cold or something for a week about a month earlier. But over the course of a month, I got nausea and vomiting 24/7. Whooziness. Significant fatigue. Sensitivity to light. After a year of nothing fixing it, two days without gluten fixed 80% or more.

[luvs2eat]

It was a WHAM moment for me. I had NO symptoms until I was 48 years old. Out of nowhere came unrelenting diarrhea and belly noises that I used to say sounded like wolverines trying to fight their way out of my gut.... no pain, just constant "runs." Two months later, I had a colonoscopy and blood work and my doc said to me, "I have good news and bad news." I asked for the good news first. He said, "I know what's causing your diarrhea." And the bad news? "You can never eat wheat, rye, or barley again."

Endoscopy a few years later gave me my "proven" diagnosis, even tho I'd already been gluten-free for two years.

Unlike many others, I never had unexplained weight loss... in fact, I went so far overboard on foods I COULD have to make up for the foods I could no longer have and gained about 40 pounds!! Aarrrggghhh!!

Since then (10 years ago), all 3 of my daughters have developed symptoms and been formally diagnosed. No one in my immediate or extended family has it. Just us girls.

[AVR1962]

I knew something was wrong 2 years prior....vision was blurring, sometimes double. I was also having digestive issues and could not figure it out, very tired and docs thought it was age.

However, it was an overnight WHAM that got me. Because I had been so tired I did a liver cleanse which basically revieled my underlying health issues. My body finally had enough. I had been dealing with alot of stress and I think that triggered the celiac.

[Chad Sines]

that stress link is so interesting because I assumed that it would be a physical trigger, but the more i hear from people, the more i hear super stress or something along those lines.

[Leper Messiah]

Slow onset of gradually worse fatigue to the point of not being able to go into work for me.

[Googles]

I was lucky that I think it was caught pretty early in terms of digestive symptoms, though some of the symptoms like knee pain and shin splints (only happens now when i get glutened) goes back to high school. But the D that lead to me going to the doctor was just intermittent when I went in. So I don't know what that means exactly. The doctor tested for celiac and lactose intolerance. Then I got a endoscopy and colonoscopy to confirm celiac and make sure there was nothing else wrong as my brother has crohn's so they wanted to make sure there wasn't anything else going on in addition to the celiac. well the GI doc said she thought it was a good idea to do the colonoscopy to make sure there was nothing else wrong since they were knocking me out anyway.

[Roda]

I percieved it as a a sudden onset. I started having issues when my youngest son was 14 months old(he is almost 7 now). I had eliminated so many things because of foods issues with him while breastfeeding. A few months before my first "episode" I had went back to a regular diet. I was having bad tachycardic episodes and on two occasions I was in the ED with a heart rate over 180. It was scary. They first thought I was hyper thyroid due to my meds. Nope I was hypo but it went untreated because they didn't want to increase my meds and have it mess with my heart rate. Long story short over the next 2 1/2 years I started seeing an endo because of the fatigue. She discovered my very low ferritin and tried to supplement, but I couldn't because I had developed such acid reflux. I eventually was doing research on low ferritin/iron deficiency and hashimoto's disease and I found celiac. I asked my endo to test for it and when the test was positive I had an EGD/biopsy that was positive. In hindsite I think I had subtle symptoms since around the time I found out about my thyroid issues in 2000. I also think the issues with constipation until around age 5 were related. I seemed fine during my elementary years through college but always had slight constipation isues. After college I used to get so bloated up but couldn't find a reason for it. It would occur just every so often but started to get worse after I had my first son in 2001. I would be so miserable I would ask my husband to rub my stomach. The constipation and bloating was something I just thought were normal and lived with it. I think my second pregnancy was what put me over the edge. All of 2005 my youngest son had issues (horrible reflux to the point of screaming all day, colic from me eating certain foods, rashes that coincided with rice or oatmeal ceral consumption, hives from pecans I injested, chronic rhinosinusitis, delayed umbilical separation at 2.5 months, reactive airway disease, thrush, intestional yeast overgrowth, etc). To help him I elimiated all tree nuts, rice, oats, and dairy in any form. I essentially was low carb and gluten light. After I started feeling bad I told my husband that I felt the best I had in a long time when I was breastfeeding. Funny looking back my son's issues helped shed light on my own. I think all his issues as a baby were gluten related also. I wasn't diagnosed with celiac until he was almost 4 and by that time all the issues he had as a baby had resolved and he was doing great and even tested negative on the celiac panel after I was diagnosed. He was diagnosed with celiac at age 5 a month shy of his 6th birthday last year. I think he has been celiac since he was born and I was even feeding him barley cereal, so no wonder he never got relief from the reflux after my diet changes. I attribute his issues as a baby to finding out my celiac and his.