My Story

[mike07]

Hello everyone this is my first post on this forum and I hope it's in the right place if not then I do apologize in advance. Anyway I thought this might be the perfect opportunity to share my story with you all in hopes of meeting others like myself as well as possibly receiving some advise form those of you that have been through all of this before.

I want to start out by apologizing in advance for the length of this message but I will try to keep it as short as possible while still being as descriptive as I can, and with that being said this is my story.

I am a 33yr old male currently living in Knoxville TN and up until mid 2005 was a fairly healthy person who's only real concern was from my psoriasis which I pretty much had learned to live with, but all of this seemed to change in the summer of 2005 where I first noticed my intermittent stomach problems which took a turn for the worse in December of last year when I contacted a mild form of the flu which for some unknown reason set off in me what could only be explained as a "sever panic attack" where I was rushed to the hospital in an ambulance.

Anyway, ever since that time I have constantly been having the symptoms listed below and went to various doctors who have all said pretty much the same thing which is that I suffer from anxiety and depression disorder and if I just learned to cope with stress better and took depression medication I could eventually get better, but I did not really accept that diagnosis so I finally took it upon myself to go and see a gastrologist who listened to my symptoms and decided I need to have a fiber sigmoidoscopy and upper endoscopy performed which was done on the 11th of this month and these are my results.

Fiber Sigmoidoscopy: Normal sigmoidoscopy to the splenic flexure.

Upper Endoscopy: Erythema in the antrum (biopsy) , Atrophy in the 2nd and 3rd part of the duodenum (biopsy)

Recommendation: Await pathology results

Anyway after the test were done and the results were viewed the Dr. came out to me in the recovery area and said even though the results for the biopsies have not come back he thought I had what was called celiac sprue disease (which ofcourse I had never heard of before) and so here I am waiting the results of my biopsies and reading all I can about this disease and trying to find some new friends who seem to share the same symptoms that have been plaguing me for the past 2 1/2 years and this is the first site I found on this journey and hoping it might be somewhere I can call home for awhile and that my friends is my story.

Thanks for reading,

Mike

For the sake of completeness here is a list my current symptoms and approximately the length I have had them:

- Psoriasis (10+ years)

- excessive stomach pain/bloating/gas (past 2 1/2 years but noticeably worse since last Dec)

- stomach always growling (past 2 1/2 years but noticeably worse since last Dec)

- constipation (past 2 1/2 years but noticeably worse since last Dec)

- diarrhea (past 2 1/2 years but noticeably worse since last Dec)

- nausea (past 2 1/2 years but noticeably worse since last Dec)

- a pinkish / reddish sore on the inside of my mouth (off and on again over the past 2 years)

- vision impairment (past 7 months)

- unexplained weight loss (past 5 months)

- insomnia (past 5 months)

- dry mouth / throat (past 5 months)

- fatigue (past 4 months)

- anxiety (past 4 months)

- tachycardia (past 4 months)

- L5/S1 disc herniation (4 months ago)

- constant nasal congestion (past 3 months)

- unexplained bruising (yellow to light green in color) (first noticed about 2 months ago)

[Eriella]

Welcome to the board!

[little d]

Welcome Mike

Yes I think that you are in the right place.

donna

[deesmith]

Welcome to the board.

Although none of us wants to find out we have a disease, it is good to have answers. If it is celiac, it will help you find out what to do to help yourself heal and begin to get better. It will take time. But this is a great place to start!

Dee

[GFhopeful]

hello, i'm pretty new here myself but just wanted to respond as tachycardia is what ended up getting me my diagnosis too. luckily, i had around 15 - 20 lbs of weight loss in a short ti me too so that ER docs flagged a GI consult. anyway, i ended up in the hospital for 6 days after a heart-rate of 180 when i went into the ER. i was also told that maybe it was a panic attack (although i didn't have a history of this and don't consider myself a high-stress person) until the results from the endoscopy came back. i am around 2 months into gluten-free and have improved, although i still have some symptoms they are fewer and far between. Good luck with the diet change - it's totoally worth it to feel closer to normal!

[Celiaction]

Mike and Everyone,

I am new to this disease and this website. I must say to mike I share most of your symptoms and then a few. One that I get that I haven't heard yet is what seems to be an opportunistic eye infection that I get a few days after I get poisoned. I get serious itching and white gooey stuff then swelling. I have tracked the weirdness of this disease pretty well as I live somewhat in isolation. No restraurants or family to throw off my observations.

As reflected in my name I take a fairly radical postion to this so-called disease. I suspect that this sensitivity is actually an advantage - that our guts are sensitive enough to ward off an inappropriate protein at the immediate level. In others the grass proteins go more into the body and are later stripped out by a variety of seemingly auto-immune functions. Multiple sclerosis in the myelin sheaths and a host of others.

I entertain a number of radical perspectives perhaps out of self-preservation, perhaps wrongly, but I am on the fringe of most ideas. That my notions are taken seriously or purported to be true is not important, but I hope to bring some new concepts and possibilities to the table.

Among the perspectives of note:

- Doctors are inDoctrinated by the pharmalogical biz and treat symptoms only.

- Health insurance is thus the leading cause of death.

- Celiacs are "canaries in the coal mine" and are sensitive to a larger problem.

- Testing reflects only the "gut" reaction and the poisen of grass proteins reflects in other people elsewhere in a vast array of symptoms and illness.

Anyways, thanks for the oppotunity to not feel alone. I am self-diagnosed and won't go under the knife and anethesia to prove what I know. I am thus shunned from the local support groups oddly.

David - Celiaction

[mftnchn]

Mike,

Welcome to the board. Let us know what questions you have. It is a big adjustment to go gluten-free and we want to support you.

[Guest Doll]

You sound like a textbook Celiac to me! Welcome to the board, and the club that no one ever wants to join.

[Guest Doll]

You sound like a textbook Celiac to me! Welcome to the board, and the club that no one ever wants to join.

[AndreaB]

Welcome Mike.

Sounds like celiac. How long til you get your biopsy results?

[mike07]

Welcome Mike.

Sounds like celiac. How long til you get your biopsy results?

Thank you everyone for your replies, I too am fairly confident that this is what I have as well and I don't mind the life changing diet if it makes me better the only downside to this diet is that it looks like everything I can eat is 2-3 times more expensive then it's gluten containing counterpart but I will not be eating out again for awhile so I will save money that way so I am hoping the cost of this will balance itself out over time.

I should be getting back my biopsy results in about a week and until I am told otherwise I am still ingesting gluten because I have read I need to be ingesting gluten for some test to work properly but as soon as I am told that I can start the gluten-free diet I will and get with a nutritionist who deals with celiac disease.

Also some people said it tough finding out you have a disease and while this is true, in my case I feel better knowing then not knowing and even better still that I can do something about it because it's more tough for me feeling the way I do everyday then it will be going on a gluten-free diet for the rest of my life and I do realize it will take awhile for me to notice any changes but I will stick in there because I have to because my life depends on it and that is all the motivation I really need.

My only concern is that the damage to my duodenum is 2 severe at this point that it cannot be healed because most of the articles I have read only speak of damage to the 2nd part of the duodenum not the 3rd so again I am just hoping it's not to late but time will tell I suppose. Anyway thank you all again for your replies I will let you all know the results of my biopsy when they come back and in the meantime I will just keep reading all I can and look for a local support group so I can get a head start on this thing so if anyone knows of a support group in the Knoxville TN area and would like to share that would be great.

Thanks for reading,

Mike

[AndreaB]

I don't mind the life changing diet if it makes me better the only downside to this diet is that it looks like everything I can eat is 2-3 times more expensive then it's gluten containing counterpart but I will not be eating out again for awhile so I will save money that way so I am hoping the cost of this will balance itself out over time.

If you buy the gluten free counterparts things can be quite expensive. You'll want to buy some but try to pick you favorites and leave out the rest. Naturally gluten free foods won't be a problem expense wise........proteins, veggies, fruits, nuts, seeds.

I think it's a good idea to stay on the gluten if your doctor wants to run more tests, otherwise it shouldn't be necessary. Regardless, it's only another week right?

[AndreaB]

Oh, I wanted to add that with a lot of damage to the intestines that it will take time to heal. Many have needed to go dairy free as well for 6 months anyway to allow some healing of the gut.

[mike07]

Yeah I should get my results back in a week or so and I am one of the lucky ones it seems. I first went and saw the gastro for the first time ever just 2 weeks ago and in that time I have already had the scopes ran and will be getting my results back soon so everything is happing quickly and when your suffering things can't happen quickly enough to begin to feel better.

Also about the dairy I would not doubt that I have a small intolerance to that as well but I have read that eating yogurt is OK and can actually help heal the intestinal tract is this true ?

[Katydid]

Wow Mike - this sounds so much like my husband. He was diagnosed with Psoriasis many years (maybe 15) before the celiac was diagnosed. However, it apparently was the DH component of celiac rather than psoriasis, because when he went on the gluten free diet, it started to disappear. He had it on his knees, elbows, knuckles and buttocks. Everything but the knuckles cleared up pretty fast, probably because they are exposed to the elements much more. I think it was a few years before his knuckles were finally perfectly clear.

This board is such a terrific place for support and information. I'm so glad for you that you found it.

As to the expense of the diet, it can be but doesn't have to be. Example-For Italian dishes.. We buy the gluten free pasta which is more expensive; but choose something other than the high-end pasta sauces which are cheaper and still gluten free. It balances itself out. This same concept can work with most meals. Also, as a previous poster mentioned, so many foods are naturally gluten free.

Being a guy, you may not be too handy in the kitchen; but there are a number of really great gluten free mixes on the market today. For instance, I use a mix for cornbread that costs $8 but makes 16 corn muffins which figures out to be only .50 each. It takes about 2 minutes to add the egg and water, bake for 20 minutes and then freeze. Now that's pretty simple...and most of the mixes are similar.

I am so anxious for you to go gluten free. I think you will really be amazed at how much better you are going to feel. My husband was so weak he could hardly climb a flight of stairs...now I have to take mega vitamins just to keep up with him.

Best of luck.

Kay

[Belinda Meeker]

Mike and Everyone,

I am new to this disease and this website. I must say to mike I share most of your symptoms and then a few. One that I get that I haven't heard yet is what seems to be an opportunistic eye infection that I get a few days after I get poisoned. I get serious itching and white gooey stuff then swelling. I have tracked the weirdness of this disease pretty well as I live somewhat in isolation. No restraurants or family to throw off my observations.

As reflected in my name I take a fairly radical postion to this so-called disease. I suspect that this sensitivity is actually an advantage - that our guts are sensitive enough to ward off an inappropriate protein at the immediate level. In others the grass proteins go more into the body and are later stripped out by a variety of seemingly auto-immune functions. Multiple sclerosis in the myelin sheaths and a host of others.

I entertain a number of radical perspectives perhaps out of self-preservation, perhaps wrongly, but I am on the fringe of most ideas. That my notions are taken seriously or purported to be true is not important, but I hope to bring some new concepts and possibilities to the table.

Among the perspectives of note:

- Doctors are inDoctrinated by the pharmalogical biz and treat symptoms only.

- Health insurance is thus the leading cause of death.

- Celiacs are "canaries in the coal mine" and are sensitive to a larger problem.

- Testing reflects only the "gut" reaction and the poisen of grass proteins reflects in other people elsewhere in a vast array of symptoms and illness.

Anyways, thanks for the oppotunity to not feel alone. I am self-diagnosed and won't go under the knife and anethesia to prove what I know. I am thus shunned from the local support groups oddly.

David - Celiaction

David,

I noticed u mentioned MS?

Could u explain why .......We have a Celiac Sprue 17 year old son,hubby,I,and 2 other son's which all show signs

But the reason I ask about MS his brother (hubby's) was DXD about 10 years ago and us having celiac disease could this be his reason too?

My mother-in-law and mostly all of his side kinda think I'm nuts when I say they r culprits too, and in September I will be able to say well I told ya so (Hubby's gene testing)

Hubby quit smoking about 6 years ago when this awful D showed it true colors, he always has the DH just was told it was exzema lol

I too have the DH and the boys

Thanks for the info u can supply !

Belinda

[Belinda Meeker]

Welcome Mike,

I sure hope u find out wht is going on soon,it takes forever to get any results and in the meantime

they say stay on the gluten

But they rn't the ones sick nor r they the ones being damaged

Oh well ! Just wanted to welcome u and say hi

U sound just like all of us

But the diet really isn't as bad as it sounds just time consuming at first .

Good luck

Belinda

[mike07]

Thanks again everyone for your warm welcomes and offers of advise I do appreciate it. I am not really worried so much about the cooking for myself aspect of things, what worries me is cross contamination because there are 4 other people living with me that do not have celiac (or atleast they don't know they do) and they eat anything and everything and can be messy at times so I worry one of them might grab some of my food and contaminate it that way or just by putting gluten and non gluten containing products in the same fridge might be enough to contaminate it so I am kind of worried about that, maybe I will buy my own mini fridge and put it in my room for things like that.

It does go to show how just eating the right foods is not enough, you have to be diligent (without worrying yourself to death) over everything that goes in your mouth and where it came from but I am learning alot before I start this gluten-free life that I am sure I am destined for so I hopefully will be prepared.

Thanks again everyone,

Mike

[kevsmom]

Mike, Have you had any bloodwork done?

While I was waiting for my diagnoses, I also had bruising all over my body. It turned out that my body was suffering from malnourishment and malnutrition.

I was extremely anemic, and I was not retaining vitamin K, which aids the clotting of blood. The Hematologist had no idea what was going on. He said the only thing that he could think of that would cause this was that I was eating rat poison. (I assured him that I wasn't )

My GI and my Hematologist were discussing if both of these things could be related to Celiac.

I did some research, and found an article in the Israeli Journal of Medicine regarding a case study of a man who developed the blood symptoms, and then was diagnosed with Celiac. I sent the article to my Hematologist, and he actually called and thanked me for it.

Cindy

[AndreaB]

maybe I will buy my own mini fridge and put it in my room for things like that.

If you have the funds that sounds like a good idea.

[mike07]

Mike, Have you had any bloodwork done?

While I was waiting for my diagnoses, I also had bruising all over my body. It turned out that my body was suffering from malnourishment and malnutrition.

I was extremely anemic, and I was not retaining vitamin K, which aids the clotting of blood. The Hematologist had no idea what was going on. He said the only thing that he could think of that would cause this was that I was eating rat poison. (I assured him that I wasn't )

My GI and my Hematologist were discussing if both of these things could be related to Celiac.

I did some research, and found an article in the Israeli Journal of Medicine regarding a case study of a man who developed the blood symptoms, and then was diagnosed with Celiac. I sent the article to my Hematologist, and he actually called and thanked me for it.

Cindy

I have not had a blood test since last December but things have change quite abit since then so I should probably have another one done just in case and I am in agreement with you that it's probably related to a vitamin deficiency or anemia. I will ask my Dr. next time I go if he will run a few test to see what comes up.

Cheers,

Mike

[mike07]

Hello again everyone I just got my results back from my biopsy and thought I might share them with you so here is a quote from my results.

The specimen(s) obtained at the time of your recent procedure was benign and showed no evidence of malignancy or sprue

and yet I still have atrophy the the 2nd and 3rd part of my duodenum and was all but convinced that it was celiac so now what ? a complete celiac panel maybe or just ask my gastro what it could be since they are saying it's not sprue and while I am glad it's not cancerous I also kinda of feel like I did 2 weeks ago with not having an answer and still to this day all of my previous symptoms are here and unexplained and I haven't had a bowl movement since the day before my test (9 days ago) AGHH so frustrating.

Thanks for reading,

Mike

[GFhopeful]

i'm sure others here will be able to give good advice - to new to this all to know alot. but i think that's strange that they are saying there's no evidence of sprue but that there is atrpohy in the deodenum. i don't get it either but you may as well get the blood work done. you could probably get a second opinion on your endoscopy results as well.

[AndreaB]

Personally, unless you want an official diagnosis I'd go gluten free and see if your symptoms resolve. If they don't all resolve then continue gluten free while you are looking for more answers. You may also need to cut out dairy for 6 months to allow some healing time. In fact I'd highly recommend it.

[mike07]

Hello again everyone here is the latest update. I called the gastrologist earlier today and his office called me back and I explained to them that I got my results back from my biopsy which showed that I did not have any signs of celiac and proceeded to ask them if it's not celiac then what else could be causing the atrophy in my duodenum, rapid weight loss, extreme constipation, and other symptoms and the person on the phone said that all I had was gastritis .

I then asked her if it was simple gastritis then why was there all that damage to my duodenum and she said it was a small amount of irritation and I then asked her if I would benefit from a gluten free diet and she said "no there is no use in causing further discomfort to yourself." Now how would being gluten free cause me discomfort I mean it's not like i'm eating rat poison I am just not eating gluten so according to my gastrologist my "offical" diagnosis is gastritis and not celiac and all I need is a little prilosec OTC and I should be fine, BLAH to that I say.

Anyway my sister seems the think that I might have pernicious anemia since that is what she was diagnosed with a few months ago and her gastrologist told her the same thing that all she had was gastritis and gastritis is one of the side effects of pernicious anemia so she thinks I should get tested for that but I don't think I have that either so I am back to square one again.

My next GP appointment is on the 1st of Aug and I think I am going to try and convince him to order me a complete celiac panel anyway as well as test for other autoimmune diseases like the pernicious anemia and any other vitamin deficiencies I might have because like I said before my last bloodwork was done in Dec of last year and that was only a CBC which would not scan for alot of these other things and alot has change since Dec.

Following that I am also going to follow the advise of the members here and go gluten / dairy free for a few months to see if things improve if not then I don't know what to do after that but I am hopeful so wish me luck I am sure I will need it.

Finally I just wanted to repeat the question I asked before about the yogurt which is I have heard that yogurt can actually heal the intestines and some of it can actually keep you regular (ie. dannon activia) but since it's a dairy product would that do more harm then good or is yogurt the exception the dairy free rule ?

Thanks for reading,

Mike