Wondering If I Have Celiac

[David in Seattle]

I am a 51 year old male. Although my general health has not been good since my early 20's (I was diagnosed with "fibromyalgia" when I was 25, even though I have no tender points, but I typically just feel achy and lousy all the time), I have never really had any chronic GI troubles until recently. Approximately 14 months ago, quite suddenly, I developed chronic digestive pain. Although there is some variability to the symptoms, 3 stand out: pain centered around the navel, generally beginning 3 hours after eating a meal, variable pain in the lower right hand side of the abdomen which feels a bit like the "catch" you may have gotten in your side as a kid when you ran on the playground too much, but which can be palpated as an internal sore spot, and a feeling in the rectum after defecating which feels a bit like the area has been moderately traumatized or distended, and which sometimes is made worse by sitting. I have had hemorrhoids off and on, this last rectal sensation is different. I also have GERD, and have been on acid blockers for about 9 years, Omeprazole for the 1st 8 of them, Ranitidine since. I am not overweight. I have been to 2 gastroenterologists and have had extensive testing, including a colonoscopy, esophageal endoscopy (both "normal"), numerous blood tests, and a capsule endoscopy. Long story short, the only abnormal results have been mild steatorrhea (fat in the stool), and from the capsule endoscopy "multiple areas of erosion and erythema were seen in the proximal small bowel, with a few scattered in the mid and distal small bowel. A small ileal ulcer was also noted". No diagnosis has yet been given, and the only treatment has been codeine, which does little or nothing to provide relief. My bowel movements went suddenly from a normal 1 each morning, to 2 or 3 a day. They are not really diarrhea, the codeine may be keeping that at bay. For the last 2 months, on my own volition, I have not had any gluten. There has been no real improvement. Last week, I had a Tissue Transglutaminase Antibody test, which was negative. This condition has just about destroyed my life. 5 months ago, my lovely wife actually abandoned me as a result of it. I don't want to bore everyone with the sad details, but as a result of a number of financial/personal reasons, if I am not able to eliminate or at least moderate this condition, I might as well be dead. The 1st GI doc initially said I had IBS, though I think the capsule endoscopy pretty much rules that out. The 2nd one said I could have Crohn's, but I have not been able to pursue that owing to insurance changes which occurred when my wife left. I am scheduled to see a 3rd GI doc in a little over a week. If anyone can give me ANY helpful input after reading the above, I would very much appreciate it. I am not kidding; owing to this condition and the many other negative factors in my personal life, I am very, very seriously considering checking out permanently.

Thank you for your time, group.

David in Seattle

[Jestgar]

Let's explore "gluten-free" a little more.

Did you just cut out pasta and bread? Or do you read labels for the presence of anything that may have come from wheat, barley, or rye?

No beer? No malt anything?

Would you consider an elimination diet that removes not only gluten, but also soy, dairy (milk), corn, and eggs?

Many people have emotional reactions to food, as well as physical reactions, and I encourage you to assume your consideration of "checking out" could be a reaction to something you are eating.

I hope you stay with us a while and let us help you try to work through this.

[David in Seattle]

Thanks for the reply. I've always been a fairly avid label reader, and not one to eat a lot of processed foods to begin with, and have eliminated all gluten, including all the more obscure label ingredients like "modified food starch", "texturized vegetable protein", starch, maltodextrin, "hydrolyzed vegetable protein", etc. Since my wife left I live alone, and if nothing else, this has made it easier to eat a restricted diet. I haven't eaten out in months.

I should add I haven't had any alcohol in nearly 6 months

I will stick around & am looking forward to more input, thanks again.

David

[Jestgar]

Have you tried keeping a food journal wherein you write down everything you eat, and every reaction you have so you can discover any connections, even those that happen days later?

[David in Seattle]

  On 2/15/2010 at 4:23 AM, Jestgar said:

Have you tried keeping a food journal wherein you write down everything you eat, and every reaction you have so you can discover any connections, even those that happen days later?

I have to an extent, but it's so anecdotal. And especially now, my diet is pretty narrow; I tend to eat the same few things, none of which were prominent when the symptoms 1st began. The only things I am certain worsen the pain are Naproxen or any other NSAID, and foods with fairly "abrasive" fiber. For instance, Trader Joe's sells a gluten-free (labeled as such) granola, a variety of which contains some small seeds which seem to cause pain. But again, especially if you're talking days in between, it's pretty hard to establish a clear cause and effect relationship. I wish there were some purpose-made liquid nutrition I could try living on for a couple weeks to see what the effect would be, followed by adding items one by one.

I see you are also in Seattle. I wonder if you could comment on the GI docs I've seen here.

David

[koolkat222]

I know how you feel about wanting to check out permanently. Don't give up yet! As daunting as a gluten-free diet was, I was willing to do anything to avoid the pain that came an hour or two after eating!

I'm so sorry about your personal situation. Things are tough for you right now, but gluten-free just may be your answer to many issues.

[Jestgar]

I didn't see any doctors about my illness. My boss, who's a pulmonologist, one day suggested wheat might be causing my problems. I spent a few hours googling, came up with gluten, and never looked back. I sent my PCP a note telling her what I had done, and how much better I felt, and she said "great! Keep doing that."

I think the IBS treatment center is probably pretty good, but they don't take insurance. The guy, at least used to, lead gluten intolerance meetings. You could go to one and ask questions (these are free).

You might want to consider cutting back on fiber and raw veggies in general. Treat your digestive system like it's been scraped raw and needs some time to heal. Choose well cooked foods, chicken and fish over red meat, skip the nuts for a while, eat plain white rice, that sort of thing.

[David in Seattle]

  On 2/15/2010 at 5:03 AM, koolkat222 said:

I know how you feel about wanting to check out permanently. Don't give up yet! As daunting as a gluten-free diet was, I was willing to do anything to avoid the pain that came an hour or two after eating!

I'm so sorry about your personal situation. Things are tough for you right now, but gluten-free just may be your answer to many issues.

Thanks KoolKat for the words of encouragement. I'm basically facing 3 challenges, personal (my wife leaving) financial (ditto) and physical, with my GI troubles. It will be very difficult to address the 1st 2, in the presence of the last one. I've faced a fair degree of adversity in my life, and I could contend with 2 of these, but all 3 at once is really getting me down. There's no question about it; if I had but one wish, it would be to get my health back. The other 2 problems would then be manageable.

I appreciate your message,

David

[David in Seattle]

  On 2/15/2010 at 5:04 AM, Jestgar said:

I think the IBS treatment center is probably pretty good, but they don't take insurance. The guy, at least used to, lead gluten intolerance meetings. You could go to one and ask questions (these are free).

You might want to consider cutting back on fiber and raw veggies in general. Treat your digestive system like it's been scraped raw and needs some time to heal. Choose well cooked foods, chicken and fish over red meat, skip the nuts for a while, eat plain white rice, that sort of thing.

Thanks for the suggestion about the IBS treatment center, I'll look into it. On the subject of foods, I think you're correct, and I have been leaning that way, although I do have a Romaine salad each night. Especially with the codeine, I need some fiber. With that though, I generally have some bland cooked meat, last night it was a baked pork chop, tonight it's a boneless/skinless chicken breast I've brined and will also bake. I used to be quite a foody before this; I've cooked in fine restaurants & I did all the cooking in our house. I especially like Indian food, the spicier, the better. It would kill me now. And just overnight. Do you think brown rice is too rough? I generally prefer it to white.

Thanks,

David

[David in Seattle]

BTW Jestgar your avatar, is that Santa peeing off the chimney??? I love it!

David

[Jestgar]

  On 2/15/2010 at 5:38 AM, David in Seattle said:

BTW Jestgar your avatar, is that Santa peeing off the chimney??? I love it!

I gotta change that

Your body will tell you if brown rice is ok. Maybe try limiting it....

And things could take a while to recover. I had some milk in a latte after never drinking milk, and it took a good two weeks to get back to normal. The initial reaction was only one day, but my intestinal tract was haywire from the unexpected stress, and all I could do was wait it out, and eat carefully.

[David in Seattle]

  On 2/15/2010 at 5:52 AM, Jestgar said:

I gotta change that

YEAH! Need to find one with the Easter Bunny, pretty soon ;-)

I think I'll try the rice tomorrow. I do eat a fair amount of dairy, particularly Breyer's French Vanilla ice cream. I hope it's not that; just got 4 cartons on sale at Albertson's!

[koolkat222]

  On 2/15/2010 at 5:26 AM, David in Seattle said:

Thanks KoolKat for the words of encouragement. I'm basically facing 3 challenges, personal (my wife leaving) financial (ditto) and physical, with my GI troubles. It will be very difficult to address the 1st 2, in the presence of the last one. I've faced a fair degree of adversity in my life, and I could contend with 2 of these, but all 3 at once is really getting me down. There's no question about it; if I had but one wish, it would be to get my health back. The other 2 problems would then be manageable.

I appreciate your message,

David

David,

When I first started gluten-free, I had next to nothing. I found that an Ensure type supplement was safe, and I lived on that for awhile. Little by little, I added different foods to my diet. I knew I was ok because I was getting nutrition from the Ensure; this made it easier to stick to adding a food at a time.

I hope this helps. You're right about getting your health back making it easier to deal with the other two problems.

[David in Seattle]

  On 2/16/2010 at 1:41 AM, koolkat222 said:

David,

When I first started gluten-free, I had next to nothing. I found that an Ensure type supplement was safe, and I lived on that for awhile. Little by little, I added different foods to my diet. I knew I was ok because I was getting nutrition from the Ensure; this made it easier to stick to adding a food at a time.

I hope this helps. You're right about getting your health back making it easier to deal with the other two problems.

Thanks, I should give that a try ("Ensure"). One thing that gets me about this it is just struck me at once; like some sort of infection that has never gone away. Was that the case with you?

David

[koolkat222]

  On 2/16/2010 at 5:32 AM, David in Seattle said:

Thanks, I should give that a try ("Ensure"). One thing that gets me about this it is just struck me at once; like some sort of infection that has never gone away. Was that the case with you?

David

Yes!! Looking back, all of my health problems (Celiac is just one of many big ones) appear to be caused be a huge stressor in my life. I didn't believe that stress could be this physically destructive to anyone until it happened to me.

[nora-n]

Which reminds me, maybe you want to read the thread on SCD diet here in the other food intolerances folder.

Some just do not get better until they eat the specific carbohydrate diet. It si older than the celiac diet.

Also, there is a variation of the SCD, it also removes high oxalate foods.

There are several scd websites, and also SCD/low oxalate websites.

About the endoscopy: erosion and redness does look like celiac to me. A negative ttg test means nothing.

Infection: there is somthing called SIBO, bacterial overgrowth.

Someone here had a positive biopsy but negative ttg, and started the gluten free diet, and did not get better, ant it was sibo.

[David in Seattle]

  On 2/18/2010 at 12:34 PM, nora_n said:

Infection: there is somthing called SIBO, bacterial overgrowth.

Someone here had a positive biopsy but negative ttg, and started the gluten free diet, and did not get better, ant it was sibo.

Nora - I have read a bit about Small Intestine Bacterial Overgrowth (SIBO). If anyone here has had any particular experience with that, I sure would like to hear about it.

One other thing: Again, this condition came on quite suddenly, with no prior symptoms of this type of any duration, ever in my 50 years. It really strikes me as some sort of microorganism or parasite in that regard, yet I have been tested for all the "usual suspects". Just prior to this, my wife & I had been visiting Los Angeles, and ate several times at an Ethiopian restaurant in the 'Little Ethiopia' part of the city. As the name suggests, this area is dominated by residents and businesses of Ethiopian and Eritrean origin. It would be very possible in such a setting to have one's food prepared &/or served by an individual who only hours before was in Africa, and who perhaps may have transmitted a bug from that region which is not one generally suspected by physicians in Seattle, WA. This is of course not meant in any way to disparage these people or this fascinating part of LA, but given the timing, I can't help but wonder. How might I find a list of possible agents not commonly seen in North America which may be responsible for my condition? Any ideas?

I will also take a look at the SCD info you suggest, thanks for that.

Thanks all for the continued input.

David