What Else Can I Try?

[reed5point0]

Ok so about a year and a half ago, my usual morning stomach pains started to get worse. I began to get worried, Chrons runs in my family, so I started going to a GI doctor, to figure out what was wrong with me.

Jan-Feb - Bloodwork and Stool samples. No results

April - Scopes..upper and lower.

The upper found that I also had Barret's Esophagus. The GI doctor said the pains were from a higher than usual amount of acid.

I changed my diet dramatically..I am a 25 year old college grad...regular boozing, cigarettes, anything citric, No tomatoes, Mexican food, pretty much anything awesome....

This helped the Acid Reflux tons, but my stomach pains were still there...

May - GI X-Ray...codename: "I have to drink all of that???? how fast again?????"(barium)

By far the coolest and worst X-Ray experiences I have ever had. No new results.

In June my fathers insurance dropped me, and I have been trying to get on my company insurance policy since then. I think I finally start on the policy OCt 1st.

Between the X-Ray and now I think I found the answer by myself...Gluten.

Having no way to go confirm this until I have a new Insurance card, I just started eating plain chicken and steamed rice for a few days...then on say a Friday I would throw a wrench into the gears and eat like 2-3 bowls of Frosted Mini Wheats etc...I would suffer.

Were talking severely uncomfortable cramps below my belly button...I played 5A football, and fell alseep while getting a fairly large tattoo...these pains will take me down in a matter of seconds.

On top of that, I get small to medium sized "pimples" on my head. I thought they were just Acne at first, but after doing my research I think they might be related. They usually pop when I comb my hair, itch like crazy, I either have sores on my head or scabs 100% of the time.

During the "attacks" I get very fatigued. I'm not much of a nap guy, but I sleep hours on end if I am having a bad day, I am very groggy and hard to get moving once I am down for the count.

Sorry for the novel of a background, but I really can't handle another round of random medical tests...mentally and financially. I want to go to the Doc, tell him what I think the problem is, and get back on track with my life. I would say I am almost 90% sure I have at least an intolerance. But the previous tests all came back negative.

What should I suggest to him? Should I go on a Gluten binge before my visit? What did you guys do finally?

[lucia]

I don't have an official diagnosis through labs. My doctor diagnosed me gluten intolerant based on dietary response. It was my idea to stop eating gluten too. The GI doc I saw told me that I didn't have celiac. I still don't know whether he read my endoscopy right, but I'm suspicious. He also told me that neuropathic pain does not coexist with celiac, which is dead wrong.

I don't need positive lab work, although it would be nice. I know from suffering from fibromyalgia for years that it's better to have an official lab positive when dealing with the medical community.

[txplowgirl]

Welcome Reed,

I had the same things on my head for over 20 years. No meds I could find would help. Dr's kept giving me different things to use which all never helped. It was only after I went gluten free and stoped using a wheat based shampoo that they finally cleared up. IN 2 MONTHS! I've been gluten free over a year and a half now and it's only when I get severely glutened will it come back.

I've gotten to the point I don't trust dr's anymore. Between being told that i'm just imagining things, it's all in my head or being told that I was just making it all up to get attention or them treating me like a child, I decided to do this on my own and with the help of all the good people on this website I went on my own. best thing I have ever done in my life. I no longer feel like i'm dying.

Fatigue is a biggie for me but between my fibro and I just found out I have adrenal fatigue, it's getting better. Also, I found that both dairy and soy as well as the gluten causes fatigue for me also.

After weighing the pros and cons for me I decided not to get tested because I didn't have the money or the insurance at the time. Also, the tests have a high false rate. So to me it wasn't worth it. With all the bad family history I have plus I have been sick since I was 7 years old I went ahead and went gluten free.

If you feel you need to have piece of paper that tells you you are Celiac then you need to be eating a lot of gluten. At least the equivelant of about 3 pieces of bread a day for about 3 months and then you still may test negative even after that.

A lot of my helath problems resolved after going gluten free.

Again, welcome to the forum, and read, read, read.

Vicky

[Marz]

The upper found that I also had Barret's Esophagus. The GI doctor said the pains were from a higher than usual amount of acid.

Hmmm... did you get multiple biopsies off all parts of your small intestine in that scope? Because damage can be patchy, and they may take samples from untouched areas, missing highly damaged areas of your intestine.

How long have you been gluten free? Gorging on gluten for a week or two before seeing the GI won't really help - it takes a few months of eating gluten to damage yourself enough to get antibodies showing up in the blood/GI damage. I really don't know if it's worth it just to get an official diagnosis.

My biopsy and blood work came out negative in spite of eating lots of gluten for a month beforehand (and I wasn't gluten free before that, I just wanted to make sure the diagnosis of celiac disease wouldn't get missed). I was also confused when it came back negative, but I felt so much better gluten free that I just ignored the GI's advice and went gluten-free anyway. As long as you're replacing wheat with lots of veges and fruit, it's really a healthy diet!

And the results of being gluten-free speak for themselves for me! My GI's "diagnosis" of IBS, insufficient dietary fiber, and gastritis - absolutely wrong! Still have a few tummy troubles which I attribute to maybe dairy and accidental glutenings, but the constant nausea after eating, most of the pain and cramps, fevers, d - all gone.

Doctors are really guessing your diagnoses based on symptoms and what they see. They see inflammation in your esophagus and you have pain, so they say well it must be Barret's Esophagus. Your stomach must be making excess acid for some unknown reason. What they don't think about, is that gluten affects your entire GI system from esophagus to colon, and for some people even neurologically/hormonally etc. They don't look at the entire picture.

Good luck with further testing, and don't give up on the gluten free idea if testing still comes back negative.

[tarnalberry]

Your doctor does not have to approve your diet. If you feel better, you can simply say "I feel much better eating gluten free, so I do that."

[reed5point0]

Thanks guys,

I genuinely feel better going "gluten free" I have always shown symptoms, I spent the past 5 years at a school with very crazy hours, it was accelerated but accredited so we were doing 2 classes a month but an entire semesters terms worth of hours 6 days a week classes run 24hrs a day. No summer, hardly any sleep, stressful but fun. However I lived on fast food, So I chalked up most of the pains to stress, lack of sleep, and my diet. but I just toughed it out but it was weird.

They just got worse and worse about last year, and I had been off the crazy college schedule for almost 2 years. From January till about April, I was hardly getting in 20 hrs a week at work, that was the most frustrating part. When I kinda started to experiment with Gluten free, it was about 3-5 weeks and the pains went away dramatically. I even think I felt happier..

Buuuuuuuuuuuuuuuuut....being the 25 yr old stubborn Taurus I am...

I "gluten" myself alot...once weekly.

For example: Sunday I was eating at my fathers and he made tuna. Usually I just mix it with Fritos and use it as a dip. But I said what the hell 1 sandwich right...wrong. within an hour the pains started, and Monday morning came around and this was the worst I have felt in months, I was down for the count. The horrible pains, rumbles in the gut, head pimples all are back and I just started feeling better yesterday afternoon (Wednesday).

Today I feel fine, but it took 3 days of just plain steamed rice. The last attack at that level of pain was the night I found out "Sticky Rice" was off limits too while at a local Sushi bar.

The Barret's Esophagus, from what I understand is that my Esophagus is now lined with the same tissue that lines my intestines. and the upper scope picked that up easy. That's where my acid problems came into play. They were to a point where I could spit up the reflux (sorry for the graphic image). Esophagus damage didn't surprise me. I mainly blame the Dr Peppers (we love that stuff here in Tx), and Camel Lights for that.

The Small Intestine scope only gets so far in there from what I was told and that I needed to do the Barium X-Ray to test the rest of the Small Intestine.

In terms of needing a paper saying I am Gluten Intolerant, it would be nice to have.