Hi Everyone! Here's My Story

[solisspirit]

So, I've been in and out of Crohn's and Celiac forums for quite sometime now. About two years ago I started losing weight in my face, and realized these ibs symptoms I have dealt with for the last 8 years, may be more serious and that I may need to see a doctor. I went to my family doctor, he did a LOT of blood test only to find nothing wrong. He sent me to a GI. He sent for my results and wrote on the papers he didn't think it was crohn's. But he did send me for a fecal fat test and found that I was only absorbing about 70% of my daily fats, and had malabsorption. He had no idea what it could be but ordered me to have a colonoscopy and endoscopy. Insurance said no, and told me I would have to wait, which I still am. In any case, I've lost weight in my face, I drink ensures daily to retain my weight, which I have been able to, and though I have similar symptoms that people like IBD have, I also don't have some.

My symptoms:

1. daily loose stools for years (I thought it was ibs for a long time so it wasn't alarming to me. I have no pain (still don't), rarely any cramps, no discolored fecal matter, and no blood)
2. weight loss in my face started about two years ago, and overall weight loss which I stopped once I started drinking Ensure's.
3. Occasional "eye-headaches", which may or may not be related to uveitis.
4. joint pains sometimes
5. metallic tasting sometimes when I eat a lot of breads or pastas (I was tested for mercury and other metal poisoning, and they all came back negative)
6. LOTS of gas
7. lactose intolerance
8. possibly inflammation (I almost know for certain there is inflammation because I can almost feel it sometimes when my lower abdomen swells, and I get eye pains in one or the other eye)
9. I can't digest corn, or anything with skin on the vegatable, like undercooked frozen peas, they come out, for the most part, in my stool.
10. scar easy (not sure what this is about)
11. when I drink milk shakes, but particularly malt milk shakes, I get REALLY bad eye pains.


Now, I'd like to say what makes me different.

1. I don't have blood in my stool, nor have I ever in the 9 years I've had loose stools
2. I don't ever have fevers.
3. I have normal looking stool, except that sometimes its a little more loose, and other times its just more solid but comes out in narrow pieces (sorry, gross I know).
4. I don't have skin leisions
5. my blood, including vitamin d and b's are all in the normal range, or at least were when my blood work was done a year and a half ago. symptoms since then have remained the same.


I am sure there are other things I forgot, but you get the picture. Maybe this is why my doctor didn't think I had crohn's, but idk. In any case, even when I go to forums like crohns's or celiac, I hear pain all the time and I just don't have any. Occasionallly, and very rarely, I will get the feeling like I can feel a movement in my colon, and it may or may not feel like a ferret is in there, but it happens about once or twice a year.

I guess I'm hoping that I can "fit" in somewhere, and if crohns and celiac, or colitis isn't it, one of the other things like microscopic entercolitis is another possibility. Anything you guys can add would be great. Thanks.

[lorimoose]

Hi Soli,

My symptoms were very loose stools many times a day, and severe pain. I would always wonder if the pain would subside or if I would end up in the hospital. It was like pain washing over me. It got to where I couldn't leave the house most of the time. When I went to work! I had to often stop on the way. Afternoons, things would calm down, but not completely.

MC is diagnosed with biopsies taken during a colonoscopy, so it might be hard to be certain of what is really going on.

That said, everybody is different. Have you tried eliminating completely gluten and dairy? You may be gluten and dairy sensitive. If you want to know for sure you can take the test from Enterolab, which can pinpoint your sensitivities. It is not typically covered by insurance, but if you can it could really help.

I hope you feel better. Tex will be able to give you more information.

Warmly,
Lori

[tex]

Hi,

Welcome to the board. First off, your insurance totally sucks, and they are probably exposing themselves to legal liability for effectively denying you your legal right to be diagnosed with (or to rule out) an inflammatory bowel disease.

Based on your description of your symptoms, you can probably safely rule out Crohn's disease and ulcerative colitis. Did any of your doctors ever test you for celiac disease? Based on your fat malabsorption test score, you obviously have significant small intestinal damage that is typically caused by gluten sensitivity. Of course, that would also be common with microscopic colitis. Though many GI docs are probably unaware of it, both celiac disease and microscopic colitis are inflammatory bowel diseases.

Occasionallly, and very rarely, I will get the feeling like I can feel a movement in my colon, and it may or may not feel like a ferret is in there, but it happens about once or twice a year.

That's a rather unique symptom of microscopic colitis. Back when I was still recovering, sometimes my intestines would literally writhe like a snake.

Both celiac disease and microscopic colitis can come with or without pain, and based on your description of your symptoms, there's a very good chance that you have one or both of those diseases. Now all you need is a doctor who is willing and able to do the necessary tests (and interpret the results properly).

Again, welcome aboard, and please feel free to ask anything.

Tex

[DebE13]

You sound like you belong here! What's up with your insurance? Since when do they get to decide if you can have a procedure or not. That's the doctors job. They tell you how much they will pay. I'd push it with your insurance because you shouldn't have to wait.

Be careful with Ensure- does it have dairy? I was going to take it because I have malabsorption issues and it would be an easy meal but decided against it. Too many unknowns in the ingredient list that had the potential to work against me.

I rarely have pain. No blood except for the occasional hemorrhoid bleed (have mine since 2011 and they never go away)

I've also had weight loss in my face over the past two years of more.

I gave horrible eye headaches (like that term). Mine rarely go away and it's one of my biggest complaints. I was hoping it was thyroid related but I'm beginning to think it's not. My thyroid is a whole different story.... I'm leaning more towards Sjogrens right now. I can't wear contacts anymore, they're always bloodshot, glassy, are dry, feel tired, hurt, and cause regular headaches. It's awful.

I have transient joint aches.

Are you GF? Eliminating the breads and pastas may help with the D.

I have problems with dairy and have lots of AM gas even though I've given up dairy a long time ago. The milk shakes may not be helping with the dairy and gluten in the malt. I'm fascinated with your eye pain because I've been struggling for quite a while with mine. I've seen a rhuemie and was told I have no markers that would indication issues she could treat. I've done Lotemax, eye drops/gels, restasis and nothing helps. Had the splutter lamp test and Schirmer test and nothing was said. I'm on the process of fathering all that data again to revisit.

I heal very slow (cuts, burns, etc.) and scar easy too.

Get me a crown because I'm the queen of Normal. My results are ALWAYS good. I now have access to my labs online so it is great. Although I'm a bit obsessed with them right now. I'm finding I'm at the low end of many of them which have all been dismissed. Not anymore! I am the healthiest sick person I know.

You sound like you would benefit from the experiences of the people here. I'd work on the dx so you know for sure. When you get your colonoscopy be sure to ask for the tryptase stain so you know if you have mast cell issues. I didn't know I would have to ask and I've had two since 2007. I'm due next fall for another and it's in my calendar to ask for it when the time comes.

Don't feel awkward describing your poo. From what you described, I'm very envious!

[Leah]

Welcome :) First off, you should INSIST on a colonoscopy with biopsies. That is ridiculous!
If I were in your shoes, I would eliminate gluten and dairy completely out of your diet and see if you start feeling better. If you do have MC, that is the first thing you would have to do any way. Give it about two months and keep track of all your symptoms along the way.
Good luck

leah

[solisspirit]

You all are very kind. And, Deb, I think we share a lot of similarities, from what I can tell. My eye headaches are something else, but I think what really shocked me was when you said something about wearing contacts and getting dry eyes, blood shot, etc. because I haven't ever been able to wear contacts for as long as I can remember because of this (I even tried the oasis brand. I always have either too dry of eyes, or they fog over while in my eye.

Now, because I've dealt with my eye-headaches for the last decade (even before my loose stools), I have found ways to eliminate the pain, so I will tell you what I do and see if maybe it works for you. Generally, my eye pain starts very mild, and I can usually tell its coming. When this happens I take two ibuprofen (Advil) and close off that one one, while seeing with the other. I know it sounds silly, and people will look at you like you're crazy, but it works. Sometimes keeping the eye open creates more aggravation in the muscle (or inflammation). Sometimes I can leave it closed a half hour with two ibuprofen and it goes away, then I reopen my eye and its fine. If you let the pain go on for too long with the eye open, the pain will get much worse to the point that you're throwing up in the bathroom with burning pain in your eye and head (been there, but I've managed to avoid that today). I think the reason is inflammation in the intestines, because I normally get these eye pains after having a hard time digesting something, like corn, nuts, or thick skinned vegetables. It's also known for others with IBD to have uveitis, but I don't know that mine is specifically that.

Also, I tried looking up mast cell, but couldn't understand it. Can you explain for me? Thanks!

Tex, my insurance has been a pain. I'm about to be on my fiancee's insurance once her and I get married this month. My GP did do a celiac test only to tell me it came back negative. However, when I visited my GI he said that I could still have it (not sure how). Maybe there are other tests for it?

I think the only other thing that bothers me is the metallic tasting that I get after eating lots of pastas and breads. I'm guessing its related because I've gone without eating much if any gluten at all and not tasted it for months. I told my doctors and they all didn't know what to make of it. My gp tested me for poisonings of different metals, but everything came back normal. At any rate, I'm very thankful for this forum and I'm hoping I may have just gotten closer to understanding what I have.

[solisspirit]

Also, one last thing. Tex, I remember reading that you said I have significant damage for only absorbing 70/30 of my daily fats. I remember my first GI tell me this and I was really worried. He came in and literally told me normally people with that amount of malabsorption have either been drinking or smoking for twenty years! Well, I don't smoke or drink at all, and I'm 34. He also said that he didn't know what to think of it but if he had to make a guess he would possibly consider pancreatic insufficiency. I went home and researched it and mentioned it on forums like crohn's and colitis, and they told me I probably needed to get a second opinion. That's when I went to my second GI who has great reviews. I just got turned down for the procedure because the insurance "wouldn't cover it due to a pre-existing condition". My question is, with this amount of damage, will I still be able to recover and heal with medication? I hope so. Thanks.

[tex]

Also, I tried looking up mast cell, but couldn't understand it. Can you explain for me? Thanks!

You can find some information on mast cell problems and how they are associated with MC at the links listed in the first post in the thread at the link below:

Mast Cells And Microscopic Colitis

My GP did do a celiac test only to tell me it came back negative. However, when I visited my GI he said that I could still have it (not sure how). Maybe there are other tests for it?

The average length of time between the onset of symptoms and a diagnosis of celiac disease in this country is 9.7 years (according to the latest published data). The reason for this ridiculously inefficient diagnostic record is because of the low sensitivity (and poor reliability) of the blood tests currently used for screening for celiac disease. The blood tests will not show a positive result unless the patient has at least a Marsh 3 level of intestinal damage. It usually takes years for enough damage to accumulate to reach a Marsh 3 level of villus damage. IOW, what your GI doc was saying is that maybe you just haven't suffered long enough yet, in order for their tests to show a positive result.

Also, if you happen to have selective IgA deficiency, then the tests will never show a positive result, because your body is incapable of producing enough immunoglobulin A in order to trigger an antibody count that qualifies as a positive result. About 1 in 300 people who are sensitive to gluten have selective IgA deficiency, while about 1 in 500 people in the general population have selective IgA deficiency.

Because of all these problems, research statistics show that currently only about 5 % of celiacs are ever diagnosed. Then there is the problem of non-celiac gluten sensitivity, which is the type of gluten sensitivity that most MC patients have. Unfortunately, the medical profession does not have an approved test to diagnose non-celiac gluten sensitivity. That means that even though we are as sensitive to gluten as the average celiac, unless we also have celiac disease (in addition to MC), and we have accumulated enough intestinal damage to yield a positive test result, we will always receive a negative test result on the standard celiac blood tests. IOW, if we do not have celiac disease, our test result will always be negative.

So that's why your doctor said that you could still have it, even though your test results were negative.

My question is, with this amount of damage, will I still be able to recover and heal with medication? I hope so.

While it's true that alcohol commonly causes the leaky gut syndrome and and can cause malabsorption, I'm not aware that smoking can do that, but maybe I just haven't come across the right research data. Next to alcohol, the most common cause of malabsorption issues is damage caused by gluten sensitivity, and/or sensitivity to other inflammatory foods.

Actually, medications such as corticosteroids slow down healing. It's the diet changes that allow our gut to heal. And yes, at your relatively young age, you should be able to heal virtually 100 %, provided that you are able to exclude all inflammatory foods from your diet 100 %. Healing takes years (like 3 to 5 years or more), but kids usually heal completely in roughly 3 years or less, while the rest of us take longer to heal, and some of us never heal completely.

Tex

[Lesley]

Do you guys mean ocular migraines? I get those too. They drive me nuts especially when they come on when I am driving. It's like having a dancing prism in front of your eye. They pass eventually but scare me when I get them. As if I didn't have enough safety/balance problems.
If anyone finds a solution please let us know.

[DJ]

Hello solisspirit, I hope that you identify the foods that trigger your problem and address it while you are young. I also hope you can work out the problem with your insurance company so you can have the tests your doctor recommended. I have spent many years having tests, taking medications, and trying not to be sick! I now believe that if I had known then what I know now about food sensitivities I would have had an easier road to travel. My story spans many decades and my symptoms have been severe but changed in presentation over time. From what you've said, it seems that you would benefit from an elimination diet. I've done it. It's not an easy diet but your findings may change your life. You may end up with a restricted diet but people adjust to that. A life of medical appointments, medical bills and harm caused by medications that don't help isn't easier than a restrictive diet! Good luck!

[tex]

It's like having a dancing prism in front of your eye. They pass eventually but scare me when I get them. As if I didn't have enough safety/balance problems.
If anyone finds a solution please let us know.

I had a few of those episodes several years ago. Mine were never followed by a headache. Without pain, they are called acephalgic migraines. I finally traced them to MSG in some chips that I had been eating. IMO most migraines are caused by diet, but other things can trigger them, also.

Do yours appear in one or both eyes? Mine appeared in both eyes, and my eyes became very sensitive to light until after they passed.

Tex

[Zizzle]

I used to get ocular migraines, especially after leaving work in the winter months. I think it was triggered by the flourescent lighting at work, followed by the transition to darkness. I use incandecent lamps in my office now. If I get one, a dose of caffeine seems to help.

When this happens I take two ibuprofen (Advil) and close off that one one, while seeing with the other.

In case you were not aware, IBUPROFEN (Advil) is COMPLETELY CONTRAINDICATED in MC and other IBDs. In some cases, ibuprofen is the CAUSE of the MC...drug induced. If you're lucky, simply discontinuing the use of ibuprofen and other NSAIDS may help. If you suspect you have MC (I sure think you do), you should find another alternative for dealing with the eye pain. Theoretically, Tylenol should be safer, although there are liver damage issues to worry about with it.

[DebE13]

Thanks for the suggestions. I can't take ibuprofen. As Zizzle pointed out, it's bad news for MC. I used to have severe migraines in my twenties. The injections caused more side effects and didn't help much so I routinely took 4-6 ibuprofen at a time. Oddly enough, that those didn't help either yet I continued to take them. Young and ignorant I guess. It is likely to be a contributing factor to my CC dx. I keep Tylenol on hand but rarely take it because it doesn't seem to do much for me.

In my case, I don't think I have the ocular migraines because it doesn't have that migraine feel. I suffered through daily headaches every afternoon in high school and I'm very familiar with what's a headache for me and what's a migraine. I must add that I had poor eating habits and my diet was filled with processed foods and breads galore at that time. Another contributing factor. My migraines were centered around my menstrual cycle and lasted days to weeks. I never had the auras but often could taste them before they arrived. Weird, I know. I was always light, sound, and smell sensitive. That part continues today. Haven't had a migraine since I changed my diet.

My eye pain fits the description on many sjogrens sites. I wore contacts everyday since I was 13 years old up until a few years ago. It's been a hard adjustment- harder than it should be. I feel squinty all the time. I"Watch" TV frequently with my eyes closed just because it hurts to see. I recently had a total thyroidectomy and was hoping that would be my magic cure to some of these issues. It's not, now I have added annoyances and pains because of that too. I noticed some improvement following the surgery but maybe I was just distracted by all the other pain. The past two weeks my eye issues have returned in full force. I'm bummed. Along with the burning, fatigued eyes come a headache caused by it. It seems as though my eyes are connected to my stomach because often I feel like the eye pain runs down directly to my stomach and causes a mild connected pain there too. I also have the punctal plugs which don't seem to help either. My eyes even look pretty dry so it doesn't do much for prolonging my tears. Like I said earlier, I've had some of the eye tests but nothing was noted as abnormal. I continue with drops.

I though the pre existing conditions limitations were now illegal??

[solisspirit]

Thanks again everyone.

Deb, with regards to the insurance, I thought so too. The issue with my insurance is when I went to the doctor the first time, I was under a different insurance company. Then I went off of my insurance because the one I had my doctor's office didn't take for procedures. Then I got on another insurance, but before it became "active" I seen my new GI, while still waiting for it to take effect. It's for this reason they say its a pre-existing condition. Basically, because I saw my new GI before I had insurance that was active, they can? say I had the issues before I had insurance and before I saw a doctor. I don't know if this is legal or not, but I called the insurance company and they said that they only "advised" that if its a pre-existing condition they would not cover the colonoscopy. It's all confusing to me, and I don't know what's right and what's wrong, or what my rights are. So, hopefully when I get on my fiancee's insurance, I won't have another problem. Thanks.