RL2011

  On 6/6/2011 at 5:31 PM, eatmeat4good said:

Oooh Rich,

Welcome, and thanks for writing your story.

I just wanna say that your Heineken might be refreshing anc crisp, but the next day will not be!

Don't drink it!

I had one last beer too, and I paid dearly for it.

Just my two cents.

That beer sits in my refrigerator as a reminder of my eating/drinking past. And I will not drink it. I will throw it out tonight. Damn you gluten!

Hey Jersey Girl! I have tried Redbridge and do not find it refreshing and crisp. The beer I have always liked are Heineken, Corona, Coors, and Guinness. If I cannot find a gluten-free beer similar to say Heineken Lite then I will look for a partner and buy or start a small craft brewery and do it myself.

Do you still live in NJ?

  On 6/6/2011 at 3:35 PM, notme! said:

congratulations, rich you are facing this head on. it took several months of denial (after 25 years of misdiagnosis and suffering) when they handed me the celiac dx for me to finally jump on the gluten-free wagon. this forum is the best place to ask questions/post info/ask questions/rant (lol) honestly, these fine people on this website saved my life! good luck

Glad to hear your life is saved and I am glad to have found this site too. I am trying to take this head on, however, for the past few weeks I still have a 12-pack of Heineken in my refrigerator that I would rather drink than throw out. I like beer and that is one of the things I will miss. I know there are a few gluten-free beers but I have not found one that I like.

Don't read this if reading the rants of a 50 year old guy will piss you off...

Oftentimes the road to healing of any part of the body inclusive of the intestinal villi is not always in a straight line of getting better. There are times when your body feels like it is having a setback when it is not. This can be from your body being a little more run down yesterday compared to a few days before that. As a soon to be reformed adrenaline junky with a number of bones and various injuries I have found that it takes concentration to keep yourself calm and relaxed no matter how bad the injury. I have taken this same approach in dealing with my gluten issues. I recently (one week ago) stopped eating gluten. This past Friday I was out with a few friends and ate some salmon and mixed greens. Within 30 minutes of eating I had a major bathroom issue starting and it really pissed me off. I left the bar I was at and as often happened rode my motorcycle fast but calmly to the nearest bathroom to deal with defecation business. This gluten issue that affects us is really frustrating but we have no choice but deal with it.

Learn your own biofeedback and try not to get anxious about anything. Don't allow anything, anyone own your emotions without your permission. As you get better at dealing with issues of any kind in a calm manner you will be better at recognizing the difference between normal healing and another potential problem. This way you can become a better advocate for your own health when dealing with doctors and such.

These words are from a guy with a lot of bumps and bruises from an active life.

Rich

You and other gluten sufferers are not alone. Here is my stinking story. Ok I will leave out the gory bathroom details. Just read between thelines.

I lived with episodes anywhere from 1 to 5 times a week of mild to severe gut pain and diarrhea for about 10 years; for years prior to that it was just a lot of gas and a big appetite. I hid my problems and thought as a lot of men do, if you don't see the wound or lots of blood then buckle up and deal with it.

About 7 years ago, I hada doctor tell me a I might have a gluten problem and had small intestinal biopsy done and my results were inconclusive for celiac disease. I continued on with life and just dealt with my gut issues. Knowing that I had a gut problem and at the suggestion of my sister I made a partial attempt to limit my gluten but still consumed a lot of beer and bread. I really just cut out regular gluten type pasta.

For many years of my life, Ihave been an active traveler…traveling around the country by motorcycle or snowmobiling many hours in areas without bathrooms. I compensated by planning my day and carrying around toilet wipes. Due to me not being shy and not having a problem with taking care of business when and where needed; both in the woods and gas stations and coffee shops everywhere, I just dealt with it and ignored those annoying knocks on bathrooms all around the country…you know them (is someone in there, is everything ok).

Last August I got a bad rash while on the road on a motorcycle in the southwest desert with temperatures well over 100 degrees for most of my trip. After 25 or so days on the road I saw a few doctors (GP, dermatologist, and allergist). The dermatologist concluded (without biopsy) it was pityriasis rosea and said it would go away on its own in a few weeks. Time and life flushed on…as usual with gut issues.

In April 2011, I went infor a scheduled colonoscopy and told the doctor that I feel better when I limit my gluten. While at my initial consultation, I told him that I have been living with gut pain, bloating, and diarrhea for a long time. I told him about my previous doctors' findings and he said I probably need more fiber and suggested I increase fiber and to continue eating gluten. He scheduled a Celiac Serology blood test for me which I took about 3 weeks later. Immediately after this initial appointment I started on a quest to consume greater amounts of fiber from various sources which all contained a lot of gluten. After my increased fiber and gluten intake and continued feeling bad, the results of my blood tests revealed that "Results may support a diagnosis of celiac disease" (I tested positive for DGP IgA).

A few days after getting my blood results while on a short motorcycle trip with a few friends and began feeling real bad. I told my friends I would meet them at the hotel where we planned to stay that night. We went in separate directions and I rode alone for a short while then found a gas station with a bathroom. While waiting for the bathroom to be free I had to walk around back of the gas station and puke. Puking was not a choice and neither was my rushing into the now available bathroom and having a 30 minute gut wrenching violent elimination. I could just imagine if anyone was paying attention as to what they thought I was going through in the middle of the afternoon. I then rode forabout 50 miles to the hotel and had to stop twice to take care of business.

During my ride to the hotel I decided that it is about time to learn about gluten and celiac disease. I searched websites using my iPhone that night and found a great deal of information and bookmarked many sites. Last Saturday (1 week ago) was my last consumption of gluten. While at home this past week; going from having a gut that felt like I had been punched many times along with many bouts of daily diarrhea I am starting to feel a better. I have had no gluten this past week and as of today I feel less foggy and more alert and had my first semi-solid movement in a few weeks.

I understand why some people let affects of gluten intolerance and other issues make them somewhat phobic aboutbeing in public along with overall feeling of malaise experienced from it resulting in stopping them from living life fully. And I understand why thick headed and stubborn block-heads like me ignore things we should not. Having said that, I am on a learning trip to get healthier and a change of my eating habits from here on.

I feel like I am in somesort of 12-step program and I am now by writing this admit that I suffer from Celiac Disease. I don't know why Irambled on here other than to say it is time for me and anyone suffering to stop suffering and make the necessary changes. That said as I kick myself in the ass for letting things go for so long.

Rich

  On 6/4/2011 at 12:07 PM, ravenwoodglass said:

You will get used to gluten free lifestyle. It does seem challenging at first but it is quite doable.

As to finding a gluten free gal who would like doing what you do, well we are out there. We don't unfortuately have gluten free tattooed on our foreheads but single gluten free gals do exist and many of us wish we could find a good gluten free guy. One thing you might consider is going to a few gluten-free support group meetings if there are any in your area. You might meet someone that way.

Thanks for your words of encouragement. And for the idea of going to a local support group meeting. I will keep my eye out for those gluten-free tattoos.

Rich

Thanks for the feedback.

Sticking to a gluten free diet for me will be a challenge. I have had some interesting digestive situations while traveling across country by motorcycle and hope that a proper diet will changethat.

Wish I could find a gluten free girlfriend who liked to take motorcycle adventures everywhere and ski, snowmobile, hike,and... I don't know anyone personally who has gluten issues. It was reassuring to find this forum.

Rich

Here are my blood tests results. Does showing positive for Deamidated Gliadin Peptide Antibody, IgA (DGP IgA) with 9.7 EU/ml and negative for the other tests suggests I should schedule a biopsy? What does this mean given your experiences?

I posted this comment yesterday on another discussion:

I do not understand why abiopsy is needed when this individual shows positive for celiac disease. I askthis because I have been suffering digestive issues for my entire life that areconsistent with gluten intolerance. I also had a rash last year for 4 monthsthat I now believe is/was dermatitis herpetiformis. A few weeks ago I was(blood) tested and it came back positive for Celiac Disease. I do not have acopy of the test with me at this moment to provide my numbers and I wonder nowis it really important to have a biopsy done to further confirm celiac diseaseor not.

Trying to understand what to do next...

PROMETHEUS Celiac Serology

_________AssayResult________________________________Value_____Reference Range

DeamidatedGliadin Peptide Antibody, IgG (DGP IgG)..............<0.4EU/ml.........< 1.3 EU/ml

DeamidatedGliadin Peptide Antibody, IgA (DGP IgA)................9.7 EU/ml.........< 2.9 EU/ml

Anti-HumanTissue Transglutaminase IgA ELISA (TTG IgA)........ .04 U/ml.........<10.3 U/ml

Anti-EndomysialIgA IFA (EMA IgA)...............................................Negative...........Negative

Total Serum IgA by Nephelometry (Total IgA).............................158mg/dl..........44-441 mg/dl

I am waiting for my Doctor tocall me back to discuss the merits of doing a biopsy.

I am not soliciting any medical advice; just your feedback is greatly appreciated about what you would do if this were your blood tests results given the above scenario.

Thanks,

Richard

  On 6/2/2011 at 12:19 AM, sb2178 said:

There are a few reasons to do a biopsy:

1) confirming it is actually celiac (TTG and AGA can be elevated in Crohn's, possibly other IBD)

2) establishing a baseline assessment of damage (in case patient doesn't respond to treatment or later problems appear)

3) bureaucracy. schools, hospitals, insurance companies, tax folks may require a biopsy-confirmed diagnosis to approve tax breaks, further routine testing like bone scans, safe accomadataions, etc.

4) persuasion of old school med community. getting family members tested or dealing with future docs is sometime facilitated by having a biopsy.

Reasons not to have a biopsy:

1) can be pricey

2) it is somewhat invasive

3) blood tests, when positive, are pretty specific to celiac disease. you can always do further testing if you do not respond to the diet.

4) positive biopsies diagnose very, very sick people. if you aren't that sick yet, your biopsy may be negative, and you may be told to eat gluten despite "latent" celiac disease.

Thank you for your feedback. I will talk with my Dr about the merits of scheduling a biopsy and his recommendation.

  On 6/1/2011 at 5:16 AM, cassP said:

your TTG Iga is your TTG iga antibodies.

your "sufficient" Iga is your "total Iga serum" (im assuming).

I do not understand why a biopsy is needed when this individual shows positive for celiac disease. I ask this because I have been suffering digestive issues for my entire life that are consistent with gluten intolerance. I also had a rash last year for 4 months that I now believe is/was dermatitis herpetiformis. A few weeks ago I was (blood) tested and it came back positive for Celiac Disease. I do not have a copy of the test with me at this moment to provide my numbers and I wonder now is it really important to have a biopsy done to further confirm celiac disease or not.

Trying to understand what to do next...