Help From Fellow Celiacs!

[ShaelaRuns]

I started having GI issues when I was 10 years old and I am now 24. It began with nausea and fluctuating D/C. When I was 13 my mom took me to a pediatric gastroenterologist who said I was lactose intolerant without running any tests. I didn't eat dairy for 5 years but my symptoms only got worse. When I was 17 I got super sick with what appeared to be the stomach flu. I couldn't keep any food down and by day 3 I was walking around the house hunched over in pain. I went to the ER where I was admitted to the hospital for 4 days because I had gallstones that had blocked my bile duct and my gallbladder was super infected. I wasn't allowed to eat or drink anything and they had me on IV food. My weight plummeted to 91 pounds (I'm 5'3" and the most I've ever weighed is 106). I was put on a super low-fat diet for 8 weeks and subsequently had my gallbladder removed.

I continued to have problems and had what was at the time, the worst episode of my life. I got really bad vertigo followed by a wall of abdominal pain, making me feel like I was going to vomit, and causing my entire body to shake. That lasted for 4 hours and in the following days it felt like my stomach and intestines were completely raw. This has now happened 11 times over the last 6 years.

At 19 I saw a gastroenterologist who put me through some tests. I had a barium contrast CT scan to check functionality and that was normal. I had a sigmoidoscopy where they took a biopsy of my colon to check for chron's, parasites, etc. and that was normal. I also had blood tests and that only showed that I have Gilbert's Syndrome (chronically elevated bilirubin level - i.e. I'm always slightly jaundice) and my bilirubin levels were consistenly low (which indicated I don't absorb nutrients like I should). My celiac blood test came back negative.

The gastroenterologist diagnosed it as IBS and I went along with it. I subsequently did 2 alternative therapies (accupuncture and biofeedback) as well as the things he recommended. I went through cognitive behavioral therapy to deal with the anxiety of my GI symptoms, learn how to better mentally deal with a chronic condition, and learn how to better manage stress. I also worked extensively with a dietician to perfect my diet - essentially I buy all organic, basic, natural foods and cook myself. I also started running regularly and have subsequently run half a dozen half marathons and a couple full marathons.

Despite all this ... my symptoms have gotten worse. A couple months ago I went to urgent care for one of my bad episodes and the doctor told me that what I described is definitely not IBS. These days I have more symptoms to add to the billet - fatigue, headaches, occasional muscle aches, vertigo, and sour/burning stomach.

I know others in my family have GI issues so I did a little probing and learned that all on the same side of the family I have 2 great grandparents that had colon cancer, a grandparent that had colon cancer, a grandma with GI flare-ups, my Dad has issues, my aunt has issues and has been gluten-free for 7 years with a lot of improvement, and I have 3 cousins with similar issues. One of my cousins was just prescribed a low dose pain killer and anxiety med to take daily.

So the problem I have with the IBS diagnosis aside from it not fitting my symptoms these days is this: researchers have not found a genetic marker for it so how in the world do so many people in my family supposedly have it? I don't believe IBS is a learned behavior by any means.

No doctor has given me any answers and I am frustrated so I'm taking things into my own hands. Since my aunt has done well on gluten-free diet I decided to go strictly gluten-free for 3 months. I started 4 days ago and I am keeping a very detailed food/symptom/exercise/sleep log and if gluten-free helps me then I plan on taking my log as evidence to a new gastroenterologist.

Feel free to leave any suggestions. Do those of you who have celiac think my symptoms could be consistent with the disease?

Thanks for reading, much appreciated!

[pricklypear1971]

Uhm, yeah!

I'd get my hands on the negative Celiac blood tests - all of those tests, actually.

If you aren't Celiac, you could be gluten intolerant-same cure...no gluten!

Good luck and hope it goes well.

[Marilyn R]

I think you're finally headed down the right road! (With no thanks to your doctors, unfortunately.) Are you feeling a little better already? You will have some ups and downs, and healing can take longer than you expect, but it is so worth it!

Wish you well! Have you found Chebe's bread mix yet? It's less than $3 a package and you can whip out rolls, pizza, etc. fairly quickly, and you don't need a stand mixer. (I use a fork.) Good luck with your journey...

[ShaelaRuns]

Thanks for the replies! I'm on day 5 gluten free and I haven't had any vertigo or sour stomach and nausea. I did have 1 short bout of D but I figure it will take more time to really determine if it's working. Upon looking back at my journal I realized I had inadvertantly eaten gluten-containing ice-cream like 14 hours prior. So who knows, I'm not sure if that was the cause of it but it's possible. Day 1 and Day 2 I had a headache and a migraine on the night of Day 2 but the headaches have gone away since then.

I'm committed to 30 days gluten free and will re-access. If I feel even a tiny bit better then I will commit for longer