Greetings from Atlanta---I am new

[jodibelle352]

Hello Deb:

I had to chuckle a wee bit when i read your opinion/question about a continuous diet of bananas,rice,applesauce and toast. LOL

OMG! I've been there and done that one and I'm going to give you my honest opinion. FOLLOW A GF DIET AS FAITHFULLY AS POSSIBLE OR YOU'RE GOING TO HAVE PROBLEMS.

I'm am and was the biggest procrastinator on these boards when I first found this site. My "stinken thinken" was if I ate what I wanted before then by golly I was going to eat the same again!!! WRONG ATTITUDE!!!!!!!!! Because everytime I wavered the Big D came back.
Dee has many many GF recipes that she's worked on and posted for all of us to try/make. Just make a post to "Calling Dee" and ask her if she would share her recipes with you and you will find that there are many things you can have that a truly very good. You will not have to live on rice, bananas, toast and rice for the rest of your life there are other things you can have.

Even though I've been here for several months I'm still a Newbie and I'm honestly trying to help NOT make the same silly/stupid mistakes I did which caused me many severe emotionsl as well as physical set backs that could have been avoided.

For me STRESS is diffinately a BIG trigger for a "flare". When we carry the problems of all our loved ones it has consequences. IMO, get rid of as much "junk in your trunk" as possible. At least try to lessen the burden by possibly writting down and putting into priority those things that need changing a.s.a.p. Those of us with MC, CC which is what I have as well other IBD's need to rid ourselves of as many triggers as we can.

Hope this post helps you and answers many of your other questions.

Love and God Bless:
Jodi

[katinchatt]

Hi Neighbor & Welcome!

I am also a Newbie, and have found this site to be invaluable. You'll find all your answers here! These very fine folks will soon become new family members, that you will turn to over and over again.

Kat in Chattanooga

[Lucy]

Hi there,

Sorry I'm having to skip some of the posts, but if, indeed, you do turn out to have DH, then most experts will automatically diagnosis you with Celiac disease, which, like celiac disease is treated with the gluten free diet. Your doc will have to diagnosis the DH.

The problem with doing an elimination diet is that at this point, you don't know when to look for a reaction in terms of the time it takes from ingestion to a breakout. So, you don't want to consider what you ate immediately prior to having a reaction of either skin rash OR diarrhea. The best thing to do is to eliminate gluten alone first for a long time before deciding you are benefitting to whatever extent from that. First, you have to make the decision with your doc about how far to go diagnostically BEFORE starting the diet. If you are going to do any further celiac testing, make your decision now before you've gotten too far along on the gf diet. Once your tissues heal, you don't want to have to re-injure them by the gluten trial. Besides, you have to have major damage to the small intestine to even pick up the classic celiac disease, and just re-starting gluten after being gluten free a while may not get you back to the pre-gf status of damage. Therefore, make the decision with your doc early, and then, start the gf trial. You apparently do have a little more time after initiating the gluten free diet to do the stool testing through enterolab, but it just makes sense to me, if you are going to do that, to do it early on, and get it over with.

I did the initial panel with genes, ttg and gluten and dairy antibodies as well as fat in the stool, then, after eliminating those two, stopped eggs immediately after setting the next specimen on the front stoop for pick-up. That stopped the next day (for me, anyway) reactions to eggs which was easy by then as I just had eggs about twice a week, and guess what, had reactions two days a week, the day following ingestion of the eggs. Yeast was done with that, so I don't deliberately ingest any of that (dietary species of yeast, that is.) Lastly, I had a rare, but obvious reaction after anything with soy in it, which I was eating so rarely that it was really a no-brainer, but I verified anyway via another flying stool. After eliminating things one eats every day pre-diagnosis, at least, and removes them totally, to the point of very few reactions, it becomes amazingly easy to find the less frequently eaten foods that produce reactions.

By the way, some people get confused as to what the cause behind the cause of their diarrhea is before they understand all of this. A good example would be my own younger sister. Her symptoms were not nearly so bad nor as numerous as mine, thankfully, but due to my discovery of the M.C. responding to gf-ness, she did a trial eliminating gluten, but at first, she kept thinking that it was what she'd just eaten that caused an immediate run to the potty with diarrhea. Usually, it was right after eating a meal, so she naturally thought it was the "grease" or "oil" in the meal, and some attribute the diarrhea to spicy foods they just ate. I think that it's just natural to have a BM after any heavy meal anyway, and these are more or less secondary triggers, but not the real culprit.

For example, due to the time it takes an "allergen" to go from my mouth to the specific area of my gut where the reaction takes place, the reaction I have on Thursday at lunchtime is to something I ate on Wednesday at lunchtime, so instead of blaming Wednesday's meal, I would ordinarily have blamed what I ate on Thursday. Make sense?

To get an idea of whether or not you react to any one food, you must remove it completely for a good while (including "hidden" amounts in foods you'd never suspect of containing it. Sometimes you get obvious relief really quickly, but sometimes you don't. In my case, it was a great lessening of diarrhea with less generalized pain all over, fairly quickly, but the total resolution of diarrhea took time off of gluten as well as removing the other foods. If I had it to do over again, I may have just sent in one specimen for the whole panel, but at that time, I was just sure I didn't have any of those other food allergies. After all, I felt too good after decades of feeling awful.

I hope this makes some sense. It's a bit early to get it all, but stick with it.
There's lots of help online with the gf diet, but "go simple" (basic) rather than processed if you can. The processed gf stuff can get way too expensive if you have to stock up on it. It's ok to get a few things that are for when you don't have time to fix a snack from scratch, but make SURE you find the taste ok before making a big investment. It's getting lots easier to find things made without alot of extra, unnecessary ingredients, including some things from the meat section, at the better stores these days. Watch out for too many ingredients, and call the 800 no. on the label right in the store if you can. They should be able to tell you if the product contains gluten or dairy or whatever. If you tend to over stock, why not get things without any or most of the other common allergens to this group. That way, you won't have to play pitch the food into the dumpster when another ingredient turns up as one of your sensitivities. I did three sets of stool tests during the elimination process, and was sooo over-stocked -- first time, I had to pitch all these dairy containing gf things, like gf puddings, cheese, etc. It was like starting all over again. I'd actually been eating MORE dairy to replace all the things containing wheat that I was no longer eating.

I'm getting way off track here, but I'm thinking that it just may be the case, if you have DH, that you won't have to eliminate anything but gluten. Wouldn't THAT be nice! Maybe not though, if you have M.C., and many celiacs have other foods they eventually have to eliminate. I hope you are not one of them.

Once again, I've written a book! Ha!
I know that you will soon get some definitive answers, at least I hope so!
Yours, Luce

[drdeb]

Hi Kittyquartz,

Thanks so much for taking the time to write to me. I too am reading every single label even at health food stores when it says gluten free! Call me paranoid. I am taking tons of supplements for arthritis. They used to work. Then I go this trigger finger out of no where. I suspect the constant rain is a contributor.

Thanks again, you guys are the greatest,
Deb

[drdeb]

Hi Joan,
I really don't particularly care for applesauce so there is no danger to that. I am finding that broiled chicken and broiled steak seem to be okay. I only use granulated garlic and Himalayan (non iodized) salt as seasoning. I really appreciate the book links. I will check them out.
You guys are wonderful. Please know how appreciative I am,
Deb

[tex]

Luce,

You didn't have to send those other two samples to Enterolab - they keep samples for about a year, just in case someone wants to have another test or two done.

Also, IMO, these GI docs who want to test for celiac disease after a patient has been diagnosed with MC, have it bass-ackwards. Celiac sprue is a much more common disease than MC. They should be checking for celiac disease first, not last. Frankly, I don't have much respect for a doc who fiddles around and waits until a patient has already started the GF diet, in an effort to help herself, and then he asks her to eat gluten again, or wait to start the diet, so that he can check for celiac disease, whenever he gets around to it. Why should the patient suffer, just because her doctor has his priorities confused? Besides, a celiac diagnosis is redundant for someone who already has an MC diagnosis - virtually everyone with MC is gluten-sensitive, and if the GI docs weren't working with such an outdated knowledgebase, they would recognize that fact.

I can certainly see your point, because in some situations, an "official" diagnosis can be important, for example, in a court of law. For most of us, though, we just want to get our life back, as quickly as we can - MC is a miserable, debilitating disease, until we can get the symptoms under control. Some day, after the GI "good-old-boys club" gets all it's ducks in a row, they will recognize that a diagnosis of MC, also implies gluten-sensitivity, so all that "extracurricular foolishness" can be spared. Until that happens, though, the name of the game with MC, is to achieve remission, in the shortest possible time, by whatever means gets reliable results. Am I wrong?

Tex

[drdeb]

Hi Jodi,

Thanks for taking the time to write. "Ain't NO WAY" I am going back to my "stinking thinking" as you put it. Too many years of this nonsense, the recent sinus infection, the skin issues, the anemia, and on top of it the D. Ain't NO WAY!!! I went to a church reception today. I brought hummus and non-gluten crackers and ignored everything but what I bought and a small slice of meat. I did have one meringue cookie and 2 cheese straws ( I know but the cheese straws were small). No immediate reaction and hopefully none in the AM.

Since gradually adding things, I have found wine and tomatoes are my no nos. I have a sulfa allergy and wine includes sulfates. I have however been able to have a gin and tonic the last 2 nights with no apparent problem.

I am getting rid of stress and I have discovered that as I am eating GF, my mood is so much more positive that potential stressers don't stress me as much.

Thanks again,
Deb

[drdeb]

Hi Neighbor Kat,

Thanks so much for your kind words and encouragement.

You all have been so kind. This is a family!

Thanks again,
Deb

[JLH]

NEVER.

[drdeb]

Hi Lucy,

I don't really consult my PCP about anything. I think she is incompetent. I plan to pick a new PCP and Kaiser facility when I feel better. I could consult the GI who diagnosed the MC and told me to drink Pepto B. However, I am responding so well to the GF diet, I don't think I need him at the current time. I am taking sublingual B12 and folic for my anemia. I am trying to be patient-takes up to 3 wks to kick in. While I still tire easily, it is not so bad. Also my depression is gone.

My movements are in the AM after I wake. Yet on 2 occasions on 2 different days, when I ate something with tomatoes, I had D 20 minutes later. It was not in the AM and I am fairly certain it was an intolerance. D leaks is what I describe these encounters as being.

I am going to hold off the panel of tests for right now since my Kaiser plan will not pay for them. If I can't figure this out through elimination, I will order them.

I'm really taking advantage of the online recipes. I've purchased ingredients to cook things. I have not had the energy to cook anything. My son (God bless him) has been cooking. He is so sweet. He asks "can you eat this?" and 49 out of 50 times I have to say no. Tonight he grilled grass fed non hormone chopped sirloin and mixed it with brown rice non gluten pasta shells. It was good. Since I am retired, I don't eat out much. I do not plan to load up on non-necessary GF items like cookies as I don't eat them much anyhow.

I am BENT and DETERMINED to GET WELL!

Thanks again for the thoughtful response,
Deb

[tex]

Joan,

I was sitting here, figuratively scratching my head, trying to figure out what your post means, (just the word "never"), and then it dawned on me that you were probably responding to my last post.

I sincerely appreciate your vote of confidence, but I'm afraid that I have to correct you, because yes, I am sometimes wrong, especially when I start offering my opinion, because we all know what opinions are worth.

Thanks, though, I appreciate it.

Tex

[tex]

Deb,

We have a few members, who, if they accidentally ingest any gluten, (as in a restaurant situation), typically react with violent D, within as few as 10 minutes after taking the first bite. Since there is no way that the food could even get out of the stomach in such a short time, let alone reach the colon, it is very likely that they are either also allergic to gluten, or their stomach has the lymphocytic infiltration pattern that marks MC in the colon. IOW, the stomach or the esophagus would have to send a signal through the enteric nervous system to the colon, instructing it to immediately purge the system, because of incoming toxicity.

Tex

[drdeb]

Interesting as always Tex,

I know that has to be the case with me.
Deb

[Lucy]

Deb,

Know what you mean about "bent and determined." That's exactly how I felt, and that's what it took to work through this diet thing. A supportive family means all the world, too, not to mention this online group of people who saved my life.

My point about any further scoping and biopsying the small intestine is that IF you do it, do it now, not later, particularly if you plan to do the gluten challenge, to check for celiac disease.

This was not the option that I chose, but some chose it. Don't think short challenges they are on are nearly long enough to get them back to their prior conditions, so if that's the case, the likelihood of picking up on the typical condition of the tissues for the classic celiac disease is probably zip. The reason that so many of us didn't go that route was that we were already well on our way, and no way we were going back to our former state.

But, whatever you do, get GF as soon as possible, and stay that way for life!

Occasionally, there are cancers and other conditions in people like us that might be picked up on scope. I'm past the 5 yr mark as of last November, so statistically, kind of think I'm at a much lower risk now, but I did have a bit of concern in the interim. As far as I know, none of us have had related lymphomas or other related small bowel cancers, and we represent a fairly large sample of pretty sick MC'rs, it's just that who wants to be the first one to have something like that? My own concern was that my gut had been inflammed for decades in which time something could've come up, like a cancer, if time is really a factor here. Actually, I think alot of my putting off the routine colonoscopy at 50 and not seeing a GI previous to that with my gut symptoms was due to my fear of having cancer of the colon. Actually, it was a relief knowing that I "only" had MC. I just wish I'd known it earlier, and been able to find out about the connection to gluten sensitivity then.

Looks like you are well on your way to wellness now. Isn't it amazing how quickly our bodies respond to being off that nasty gluten mess? I'm actually beginning to FORGET some of my zillions of symptoms now. Every now and then, something will remind me of one of them that I'd forgotten. It's like watching a movie you saw as a kid, and thinking, "I don't remember that part!"
Ha!

Yours, Luce

[drdeb]

Thanks for writing, Luce

With me, I still remember that movie. LOL I can't wait until the day comes when I say, it is hard to remember that part of my life. I am simply reading a lot of labels, and eating out very infrequently.
Best to you,
Deb