Is This Celiacs?

[K-Lea]

Hi All,

I have been having undiagnosable stomach problems for 15 years. I have had tests and they are always inconclusive. However, I was diagnosed with IBS-C years ago, but the doctor didn't give me any suggestions or medications other than, 'try to figure out what you are eating that causes this problem'. So, a few years later I decided to go on a vegetarian diet and in doing so, I ate an inordinate amount of dairy. It was then that I discovered my body doesn't like dairy, so I cut it out of my diet all together, which rendered me vegan. My stomach problems never went away completely, but they certainly got better. Over the past couple of years, however, I have become very gassy. I mean gassy in a distended, I look 9 months pregnant kind of way. It hurts to be so distended and the only thing that will usually get it stop is gas-x or mint tea. After the distention goes down, I have a chronic sore like feeling in my belly. Kind of like the feeling you get when you've had way too much coffee. It hurts worse if I push on it (I know, then don't push on it!).

I come to this site now because 2 weeks ago I ended up having to go to the ER for pain in my left side (about 2 inches away from, but parallel to, my belly button). The reason I went to the ER was because no GI in town could see till September!!! And in addition to the pain, I had been constipated for 2 weeks and finally went and it came out in ribbons. I was a little worried I had a bowel obstruction. So, at the ER they did an X-ray and said I was backed up, but not obstructed. They said I could become obstructed or perforated if they didn't get the backed up stool out. So, they gave me a bottle of Magnesium Citrate and an enema. They made we wait for a few hours on the Mag Citrate and nothing happened so they sent me home with Go-Lytely, a colon prep kit. They said it would make me go in an hour or so. I took it as directed and nothing happened for about 10 hours. Then it all came out and the pain subsided a little, but not all together and I still didn't feel right.

I then went to see a GI and he said he needed to do a Colonoscopy to see what the problem is because I do everything right on my end..... I am a vegan, eat plenty of fiber, drink close to a gallon of water a day and walk at least 3 miles a day and do other exercise. He also tested me for Celiacs Disease (results are still pending). The colonoscopy is scheduled for next week.

In February I went to an allergist who told me he feels that I have a wheat intolerance and to do a gluten free diet for a month. I did it for a month and completely free of all wheat and gluten. It didn't make a difference so I stopped. My GI said that a month isn't enough time to tell if you have an intolerance to wheat or gluten.

So, I guess my question is: Does any of this sound like Celiacs?

Here are my symptoms in list form:

Vitamin D deficient- initial score was 21 and then I scored an 18 after being on supplements of 50,000 IU/once a week for 12 weeks

Constipation- alternating with pencil thin stool

Gas and Bloating- distended and painful all over abdomen

Weird patches of skin that don't itch or hurt, but are red, dry and look like goosebumps

Weight GAIN

Weird taste in my mouth

Headaches

Skin breaking out in pimples, even though I am near 40 and have never had pimples

Thank you for reading. I appreciate any insight and comraderie anyone has.

[Salax]

I think the "weird patches of skin" are keratosis pilaris (Open Original Shared Link)

Anyways, it could be Celiac Disease. As a side note, an endoscopy could confirm villi damage, hence celiac disease, but Colonoscopy's do not.

You could always try the diet, but if you want an actually diagnosis you need to continue to eat gluten until you have an endoscopy to confirm.

Personally, I would try to eat a very basic diet in the mean time (rice, applesauce, etc). I know your a vegan, do you eat alot of soy? Soy is an issue for many of us. I hope you feel better soon and the doctor has an answer for you.

[K-Lea]

Thank you for your response. I do eat a lot of soy.... and I fear being told I shouldn't eat it either! However, I am good at improvising and reading labels from 10 years of veganism, so I know I will be fine.

I guess at this point I will have to wait for my test results. One more question, is it possible for a blood test for Celiacs to come back negative? If so, should I then ask the doc to do an endoscope to check for it?

[Salax]

Thank you for your response. I do eat a lot of soy.... and I fear being told I shouldn't eat it either! However, I am good at improvising and reading labels from 10 years of veganism, so I know I will be fine.

I guess at this point I will have to wait for my test results. One more question, is it possible for a blood test for Celiacs to come back negative? If so, should I then ask the doc to do an endoscope to check for it?

Yes, it is possible to come back negative. So I would recommend the endoscopy at that point. Even if the endoscopy comes back negative, you might have a gluten intolerence at that point rather than Celiac. So trying the diet for at least 3 to 6 months to give it time to see if it really helps. The worst that can happen is nothing, the best...you feel awesome.

Things to consider when you start the diet if you choose too is that many of use don't get well right off the bat, it takes time to essentially-detox off gluten. I think one month is too short. When I first started it took me about 4 months to see a difference. And the best thing about this is technically you don't need a doctor's permission to try it.

[DanieGurl]

I get a wierd taste in my mouth too! almost metallic, kinda but not?

I havnt been diagnosed but wondered if this could be related

[K-Lea]

Hello,

I realize I posted this months ago. I just wanted to give an update.

After the colonoscopy, I was diagnosed with a 'tortuous colon'. I have about a foot of extra large intestine on my left side and it twists and turns. This is why I have pain there frequently. The tortuous colon was likely caused by years of chronic constipation (it was stretched out repeatedly and eventually stayed that way, much like skin does when someone gains weight for a sustained period of time). The doctor told me I would need to take Miralax daily for the rest of my life. Oh, and the Celiacs blood test came back negative.

Months went by and I took my Miralax daily to keep things moving and it was mostly successful. Then in late September I came down with something (likely a malaria relapse- I contracted malaria in Tanzania and I have the relapsing strand) and I couldn't get better. The fever went away after a few days, but the vomiting and diarrhea stayed for a week. I tried to eat things I thought my stomach could tolerate: toast, crackers, pretzels, plain bread, etc. Well, I went from sick to sicker and started getting a bad pain in my right side (the side opposite of the tortuous colon). After a week I went to my doctor and she told me to go to the ER if I didn't feel remarkably better in 3 days. In 3 days I felt worse and the pain was so bad I couldn't focus. So, I went to the ER and they took an X-ray, nothing showed up. Did blood work, nothing showed up. Eventually they did a cat scan and bingo!!! I had colitis. They put me on an anti-biotic and an anti-protozoa. I researched colitis and discovered that it can be caused by bacteria (thus the anti-biotic), parasite (thus the anti-protozoa) or an auto-immune response. So, I instantly decided to get rid of wheat and gluten to see if it would help. I felt better within weeks (days really) and I lost 8 lbs. (I had gained about 8-10 lbs. despite being vegan and exercising). I also stopped getting a daily headache and I had no more bloating or gas and I have no more weird skin patches. In addition, I stopped having a need for Miralax.

My best friend has Celiacs and she told me that it is likely that my body had an intolerance, but that my malaria relapse (and me eating a ton of wheat during it) could have sent me over the edge.

So, I don't know if I have Celiacs, but I know that my body does not want wheat/gluten anymore. I have accidentally eaten some 2 or 3 times (it was in a condiment) and I blew up like a balloon and had stomach pain.

I guess I will not know for sure what the problem is because I am under the impression that in order for me to find out through an endoscope test, I would have to be actively eating wheat and gluten. Is this correct? If so, I will never know because I just can't do that to myself!

Anyway, I love this website. I may not post on it often, but I refer to it almost daily for information and to just feel comforted knowing there are others out there who understand. So thank you!