I’m really not sure although I’m not sure how to go about it?

[chickenpie]

I’ve had a really weird health journey. I’m sorry not all of it is related to gluten but some of it I think is. A couple years ago I was prescribed a medication (prednisone) after an allergic reaction. I told the doctors 3 times I was lactose intolerant. I didn’t realize the medicine had a little amount of a milk derivative in it until I had 2 pills and my stomach was very off. I knew I couldn’t take the medication anymore. That night or the next day is when this disgusting pain started in my stomach. Went to the hospital that didn’t prescribe me the medicine and they said it’s because your lactose intolerant and people who are lactose intolerant don’t do well with this medication and I was just constipated and I would be fine. The next month to two months were pitch black absolutely disgusting diarrhea. Discovered later from a med student and their professor it was most likely internal bleeding. I had lost a ton of weight that I didn’t need to. Sometime after this the burning started after eating certain foods, dairy, eggs, gluten and soy (it was a very confusing time) I figured out which foods were causing this (I now know the burning and tingling as inflammation from hives) It’s not allergies though although it behaves like one. (I was tested for food allergies) Long story short it progressed into being around the foods I couldn’t eat was giving me weird reactions, burning, tingling, hives, brain fog, confusion, extreme fatigue, exhaustion etc. Recently my stomach has been physically hurting being around these foods. Cue to last night I went to mass and we have gluten free hosts. The priest kept touching the gluten hosts and didn’t use hand sanitizer in between the gluten hosts and the gluten free hosts. I grabbed it stuck it in my mouth, almost immediately knew something wasn’t right (my stomach and body let me know) It fell out of my mask so I quickly pick it up and stash it in my clothes against my skin (important to add because touching things that I can’t eat or cross contamination is not a good time. Last night my stomach pain didn’t go away because of the cross contamination. Today my stomach pain is pretty bad and I’m bleeding anally more than usual when this happens (eating or being around foods I really shouldn’t, this usually happens with bowel movements. Going to the bathroom # 2 has always been difficult for me. I’m a bit freaked out at the moment and in lots of pain. No idea what to do and no idea if I have celiac disease I just know that gluten doesn’t like me very  much. I’ve had really weird stomach problems since I was a little kid. I hope this is okay to post. I do want to add a redditor thinks I might have something called Mast Cell Activation Syndrome.  I don’t know if I do have this and if it could be connected to celiac disease or not? I just thought it was relevant because it was caused by gluten this time. Thank you for reading. 

[trents]

Black stool would indicate bleeding higher up in the digestive track as opposed to the colon or rectum. Bright red stools would indicate bleeding lower down. Certain foods (like leafy greens) and certain meds (like Pepto Bismol) can also blacken stools.

 

Have you had both and endoscopy and a colonoscopy recently? If not, I would press for both and as soon as possible. You could have a peptic ulcer or even worse, a tumor. Don't mean to scare you but just want you to get this scoped out soon.

 

Mast cell activation syndrome is often found in conjunction with celiac disease.

 

In the meantime, stay away from dairy and oats. Both of these can cause inflammation of the small bowel lining similar to what gluten does. About 10% of people with celiac disease react to oat protein the way they do gluten.

[chickenpie]

8 minutes ago, trents said:

Black stool would indicate bleeding higher up in the digestive track as opposed to the colon or rectum. Bright red stools would indicate bleeding lower down. Certain foods (like leafy greens) and certain meds (like Pepto Bismol) can also blacken stools.

 

Have you had both and endoscopy and a colonoscopy recently? If not, I would press for both and as soon as possible. You could have a peptic ulcer or even worse, a tumor. Don't mean to scare you but just want you to get this scoped out soon.

 

Mast cell activation syndrome is often found in conjunction with celiac disease.

 

In the meantime, stay away from dairy and oats. Both of these can cause inflammation of the small bowel lining similar to what gluten does. About 10% of people with celiac disease react to oat protein the way they do gluten.

Thank you so much for this information I really appreciate it! I’ve been reintroducing oats lately here and there because its one thing that has some promise of possibly being reintroduced. What does higher up in the digestive track mean? I’m not great with the layout of the human body. I haven’t had a endoscopy or a colonoscopy ever. Doctors don’t seem to want to listen to me and keep saying it’s anxiety. I really don’t think it’s anxiety. ( I have anxiety and this definitely isn’t it) I’m hoping to get a referral soon because it would be good to get this figured out. I’m just relieved you actually know what it is I just found out about the syndrome not that long ago. This could explain why gluten really doesn’t want to be my friend. I appreciate your reply and I’m glad this post isn’t in the wrong place and wasting people’s time. The oats I’m trying a little bit I don’t have many options at the moment. (college dorm student) 

[trents]

Higher up in the digestive track would mean esophagus, stomach and small bowel. Below the small bowel is the large bowel which terminates in the colon and rectum. If you are taking iron supplements that can also cause blackened stools. 

What country are you in? Do you have health insurance? Are you relying solely on the college medical clinic or do you have access to outside doctors? Anxiety does not explain bleeding in the GI track, if that is what is going on. One of the biggest medical myths out there is that anxiety causes ulcers. In fact, most ulcers are caused by bacterial infections. You might look up h.pylori. 

And welcome to the forum community!

Edited April 12, 2021 by trents

[chickenpie]

1 minute ago, trents said:

Higher up in the digestive track would mean esophagus, stomach and small bowel. Below the small bowel is the large bowel which terminates in the colon and rectum. If you are taking iron supplements that can also cause blackened stools. 

What country are you in? Do you have health insurance? Are you relying solely on the college medical clinic or do you have access to outside doctors? Anxiety does not explain bleeding in the GI track, if that is what is going on.

Thank you so much for explaining I appreciate it! I am not taking iron supplements and I don’t believe I’ve ever tried them. I’m in the United States. I do have medical insurance and it really depends on if I can get someone to listen and write me a referral to a specialist. I definitely understand it doesn’t. The doctors I have seen and or spoken to are not getting what I’ve tried explaining it time and time again. 

[trents]

7 minutes ago, chickenpie said:

Thank you so much for explaining I appreciate it! I am not taking iron supplements and I don’t believe I’ve ever tried them. I’m in the United States. I do have medical insurance and it really depends on if I can get someone to listen and write me a referral to a specialist. I definitely understand it doesn’t. The doctors I have seen and or spoken to are not getting what I’ve tried explaining it time and time again. 

One thing you can do is to ask a doctor to give you a hemoccult test kit to check for blood in the stool. You take it home and capture a small sample of stool and mail it into a lab which reports the results back to your doctor. Most doctors will agree to that as they have those on hand in their office and it's an inexpensive diagnostic step.

[GFinDC]

Here's a search for doctors near Albany, NY that treat celiac disease.  You want to see a GI (gastrointerologist), and hopefully one that deals with celiac disease.

https://doctor.webmd.com/find-a-doctor/condition/celiac-disease/new-york/albany/excellus-bcbs-simplybluesimplyblue-plus

Bleeding in the small intestine can be related to celiac disease damage.  But it can be caused by other conditions also.  A GI is specialist in digestive system conditions.   There is a blood test called a celiac panel that tests for antibodies to gliaden, IgA, IgG etc.  You need to be eating at least some gluten for 6 to 8 weeks before the blood tests every day.   The endoscopy requires less time eating gluten.

Edited April 13, 2021 by GFinDC

[GodsGal]

13 hours ago, chickenpie said:

Thank you so much for this information I really appreciate it! I’ve been reintroducing oats lately here and there because its one thing that has some promise of possibly being reintroduced. What does higher up in the digestive track mean? I’m not great with the layout of the human body. I haven’t had a endoscopy or a colonoscopy ever. Doctors don’t seem to want to listen to me and keep saying it’s anxiety. I really don’t think it’s anxiety. ( I have anxiety and this definitely isn’t it) I’m hoping to get a referral soon because it would be good to get this figured out. I’m just relieved you actually know what it is I just found out about the syndrome not that long ago. This could explain why gluten really doesn’t want to be my friend. I appreciate your reply and I’m glad this post isn’t in the wrong place and wasting people’s time. The oats I’m trying a little bit I don’t have many options at the moment. (college dorm student) 

Hi! Welcome! Definitely keep asking for a referral. You need to see a good GI doctor. I know that eating gluten free is expensive, and being a college student, you probably have to watch out for the pocket book. However, if you are noticing symptoms after eating oats, I would highly recommend cutting oats out of the diet. When I tried reintroducing oats, I had painful bloating within the hour. I had eaten gluten free rolled oats, and the next day it looked like my bowel movements were full of splinters. Also, I noticed that my skin issues returned when I had oats. 

I hope this helps!