Colonoscopy/endoscope showed celiac

CeliacinKY · February 17, 2018

I have not been formally diagnosed with celiac, but had a colonoscopy and endoscope 2/14/18 and my GI said it showed celiac disease. I will see him again in two weeks to get the official results, but I am now convinced I have celiac disease. Looking back I have had mild digestive symptoms for years, but after having nausea and bowel changes, I decided to ask for a colonoscopy since I was 51 and needed a screening anyway. After hearing my symptoms, the doc also ordered an endoscope. In the few weeks waiting for the appointment, I had what I thought was either the flu or the mother of all stomach viruses. Vomiting, diarrhea, severe body aches, low grade fever that lasted almost a week. By the time of my procedure, I felt better but not completely well. Since I had mainly quit eating solid foods (I craved milkshakes of all things) and then had to do bowel prep, I noticed in some ways I actually felt better. Since I was told it showed celiac, in the last two days I've eaten gluten free even though I don't have the formal diagnosis. But last night we went out to eat, and I decided to eat a meal I knew was not gluten free. Kind of an experiment. We went to the grocery store afterwards and I told my husband, "I've got to get to the bathroom fast!" It was out of order. I ran to the McDonalds next door and almost didn't make it. I learned my lesson. I'll definitely go to the GI for my followup appointment, but I'm sure now that it is celiac disease. It's weird how I went from mild symptoms to this in a matter of weeks. I also have the skin rash and constant muscle aches that started about 9 months ago. If I don't take NSAIDS I can barely walk. I saw my regular doctor and a rheumatologist for this and never got a diagnosis, other than possible fibromyalgia. I am curious to see if gluten free will get rid of these body aches, since all the NSAIDS have irritated my stomach. Also, out of the blue a year ago I developed horrible migraines. I'd never had them before. Six months ago I was diagnosed with mono, followed shortly by a severe strawberry allergy (I have to carry an epi pen). Just really strange things started happening to my body, and I've only now put two and two together. After doing my own research, I know these are all symptoms of celiac disease. Even though the diet change will be life altering, I think it will be worth it. Thanks for letting me share my story.

Ennis-TX · February 17, 2018

4 hours ago, CeliacinKY said:

I have not been formally diagnosed with celiac, but had a colonoscopy and endoscope 2/14/18 and my GI said it showed celiac disease. I will see him again in two weeks to get the official results, but I am now convinced I have celiac disease. Looking back I have had mild digestive symptoms for years, but after having nausea and bowel changes, I decided to ask for a colonoscopy since I was 51 and needed a screening anyway. After hearing my symptoms, the doc also ordered an endoscope. In the few weeks waiting for the appointment, I had what I thought was either the flu or the mother of all stomach viruses. Vomiting, diarrhea, severe body aches, low grade fever that lasted almost a week. By the time of my procedure, I felt better but not completely well. Since I had mainly quit eating solid foods (I craved milkshakes of all things) and then had to do bowel prep, I noticed in some ways I actually felt better. Since I was told it showed celiac, in the last two days I've eaten gluten free even though I don't have the formal diagnosis. But last night we went out to eat, and I decided to eat a meal I knew was not gluten free. Kind of an experiment. We went to the grocery store afterwards and I told my husband, "I've got to get to the bathroom fast!" It was out of order. I ran to the McDonalds next door and almost didn't make it. I learned my lesson. I'll definitely go to the GI for my followup appointment, but I'm sure now that it is celiac disease. It's weird how I went from mild symptoms to this in a matter of weeks. I also have the skin rash and constant muscle aches that started about 9 months ago. If I don't take NSAIDS I can barely walk. I saw my regular doctor and a rheumatologist for this and never got a diagnosis, other than possible fibromyalgia. I am curious to see if gluten free will get rid of these body aches, since all the NSAIDS have irritated my stomach. Also, out of the blue a year ago I developed horrible migraines. I'd never had them before. Six months ago I was diagnosed with mono, followed shortly by a severe strawberry allergy (I have to carry an epi pen). Just really strange things started happening to my body, and I've only now put two and two together. After doing my own research, I know these are all symptoms of celiac disease. Even though the diet change will be life altering, I think it will be worth it. Thanks for letting me share my story.

Yeah it is sort of the club you never wanted to join, but at least you have answers and can put a end to all these crazy things happening and perhaps heal a few. The disease is a autoimmune disease that is genetic and can be dormant for years. A shock to the immune system normally can either bring the disease out or change the symptoms/cause your immune system to develop other issues. Sounds like you had your share of triggers to change it up, and seen some of the consequences like random allergies, intolerance, etc. that also come up.

If your still testing....you will need to keep eating gluten, you mentioned they did the endoscope but if they are still planning blood test then you have to keep eating it in small amounts so they antibodies can be detected.

This disease, the medical required gluten free, means you do not eat out at untrusted/undedicated restraunts, and that any kind of cross contact/contamination can make you sick, even residue/crumbs from colanders, condiment jars double spooned into, cutting boards, pots, pans, etc. You will need to get alot of new stuff and toss the old. A gluten free household makes this much easier to manage.

If done with testing, go to a whole food only diet dropping dairy and oats also for a few weeks/months. This will help you boost your healing and get you back on track. Soups, stews, chili, omelettes from whole food sources is great. Here are some useful links and thanks for the story.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

CeliacinKY · February 17, 2018

Thanks so much, Ennis. I've got a lot to learn!

tessa25 · February 17, 2018

You need to keep eating gluten daily until they do the blood test. Perhaps you can call on Monday and request the blood test be ordered that day. Ask for the full celiac panel which includes:

TTG IGA

TTG IGG

DGP IGA

DGP IGG

EMA

IGA

Make sure to list all of the above tests. Then you can get tested on Monday and you'll have a complete baseline. It is my understanding that while you can get a diagnosis based on endoscopy alone most likely your doctor is going to want a blood test and I don't see why you should wait two weeks eating gluten when you can get the blood test on Monday then wait until your appointment to discuss everything. Make sure you get copies of all of your test results for your files. Because celiac is a do-it-yourself disease (the fix is food based) it's good to have baseline numbers so that you can see your progress yourself.

CeliacinKY · February 17, 2018

Thanks, Tessa. Good advice.

muchbetterthanmost · February 17, 2018

I was diagnosed 20 years ago with celiac disease at the age of 35. In my case, I did get constant diarrhea and terrible cramps in my hands, arms, legs, neck, etc. But these were quickly eliminated with the gluten-free diet. I also experienced better energy levels and generally less anxiety from the diagnosis because I thought I was dying.

I was shocked to be told by my GI doctor that I would not be able to eat even one mouthful of gluten without causing health problems. So I defied that advise and ate a pop tart only to find the doctor was exactly correct!

I would suggest avoiding all the gluten-free flour replacements at first simply because once you start digesting correctly you may experience tremendous weight gain. I gained 99 pounds in about 3 years. Once you realize what normal digestion delivers (perhaps up to a year later) then add in flour replacements to your diet and watch your weight. This way you won't add health problems associated with weight gain and high blood sugar which will be extremely difficult to remedy with the new gluten-free diet habits that you have adopted.

Later my general health doctor ordered blood tests to check for thyroid levels, cholesterol and arterial plaque and A1C for blood sugar. After about 3 years I adopted my new lifestyle, albeit with much difficulty.