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Is This Celiacs?


K-Lea

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K-Lea Newbie

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.

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Salax Contributor

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.

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K-Lea Newbie

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?

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Salax Contributor

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. :D

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. B)

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DanieGurl Rookie

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

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  • 6 months later...
K-Lea Newbie

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!

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      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
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      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. 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