New "victim" Needs Advice

[VAGuy]

I could really use some advice if anyone has a little time.

A dietician suggested I try a gluten free diet in Nov and it has made a huge difference in life, but now I do not know what to do.

1. It appears going off gluten prior to testing complicates things

2. It appears (from reading) they might want to put me back on gluten and bring symptoms back so they can verify via biopsy

3. I am tired of being a guinea pig

4. Financially in very bad straights since I haven't worked for so long due to related preoblems

5. sugar between meals bad, fresh fruit bad, excessive fiber bad

I'm thinking of trying a couple of tests from EnteroLab, and maybe the 1/2 hour consultation - and/or blood tests from Immco Diagnostics -

Am 51, would be homeless by now if not for a great Mom - was told for years it was IBS, "just stress," "eat lots of fruit and fiber (yeah, right), now feeling better

Any thoughts on what to do next?

[gf4life]

Hi VAGuy,

Yes being off gluten will alter the results of the blood tests and the biopsy, but since you have only been gluten-free for two months you hsould still be able to be tested by Enterolab. I highly recommend them, and they do offer a few tests. You could e-mail Dr. Fine at Enterolab and ask him which test he would recommend for you (the stool or gene test) since you have been gluten-free for two months. From the sounds of it you might have trouble affording the entire panel of tests at around $400, so the stool test at $99, or the gene test at $149 ( I think that is the right price) would probably be your best bet. I recently did go through a "gluten challenge" for the biopsy, and I wouldn't recommend it unless you have to have a conventional diagnosis. It was awful. I feel much better now that I am back to being gluten-free. I don't ever plan on going back on gluten voluntarily again.

As for the sugars (fruit, table) and excess fiber, that could be from the damaged villi not being totally repaired. The villi produce enzymes that digest sugars in the intestines. At the tip lactose is digested, and further down are the other sugars, but I can't remember the order right now. How are you with dairy products? You may just want to avoid all the things that seem to bother you and give your system complete break for a while (say two to four weeks?) and then add things back slowly and see if you can tolerate them a little better. Chances are that your intestines have been taking a beating for quite some time if you are 51 and have been so sick as to not be able to work! Thank God for your mom! She must be a special person to be willing to take you in and care for you. I hope you are able to get feeling better soon and be able to return the favor to her when she needs it.

I'm just wondering if you have had any testing before (or during) the IBS diagnosis. One doctor's website said that IBS is the diagnosis given after all the tests for other diseases come back negative. I found this to be the opposite for me, they diagnosed me with IBS 16 years ago, after doing no tests at all, and the only way I got any testing done was to pester the doctors until they gave in. Although my GI doctor still won't believe me about the celiac disease, I did confirm my diagnosis through Enterolab and found out that I have the main gene that predisposes a person to the disease, and I am producing antibodies to gluten that show in the stool test. I also was able to learn that I am sensitive to Casein (a protein in milk) and so I am dairy free as well. I was glad to find out about that, since I have now learned that the dairy causes a lot of my GI problems and I would not have eliminated dairy had I not known about the sensitivity. I would have just wondered why my symptoms were still present while I was gluten-free.

If you have any specific questions, just ask.

God bless,

Mariann

[aldociao]

As for the sugars (fruit, table) and excess fiber, that could be from the damaged villi not being totally repaired.  The villi produce enzymes that digest sugars in the intestines.  At the tip lactose is digested, and further down are the other sugars, but I can't remember the order right now. (from Mariann)

Mariann,

I found the information on the digestion of sugars very interesting, and perhaps explains a problem I've been having. Will post when I know more. In the meantime, can you give me some ideas on how I might find supporting literature on this point? Don't bother if you draw a blank. I will be doing my own web searches for answers.

VAGuy,

You mentioned Immco Diagnostics. Do you recommend them? Is so, could you give information on how to contact them?

Aldo

[VAGuy]

To gf4life, thank you for your response - it was really helpful.

There were no tests prior to my dieticians suggestion, I've been working with her for 18 mo. or longer trying to figure out what was wrong with me. Several GPs just told me it was stress/IBS - no tests. Had a bout of diverticulitis in '95, told him of problems, I think he just kind of ignored my complaints, years later when I began with dietician she was surprised he told me to go high fiber and fruit diet with my existing problems.

Dairy products are a gray area - I'm not sure, small amounts seem ok, but I need to find out.

I have noticed references of being jittery, jumpy, ill at ease, etc. in reference to how people feel on a gluten inclusive diet - one thing I have noticed lately is how much more calm and relaxed I am these days. I did a BioFeedback program a couple years ago, and it really helped. I do my "exercises" on a irregular basis and it really is wonderful, but since being off gluten it is as if everything has slowed down - it's really nice.

And yes, my Mom is a wonderful person. I do almost all cleaning and cooking, I am the chauffeur (sp?), shopper, walking partner, and the guy who fires up the fireplace for her. She was always a great baker, so it was tough at first to adapt, but its worth it to feel better, and it doesn't bother me to pick out deserts for her. I'm trying to learn to bake now - my sister sent me a copy of The Gluten Free Gourmet Cooks Fast and Healthy, by Bette Hagman, and there is mention of a woman winning a baking contest with a gluten-free free crust so that is encouraging.

It seems doctors (again from reading) are resistant to the idea that people have celiac disease - I wonder why?

Thanks again, Phil

To aldociao - I have only heard of Immco Diagnotics, think it was mentioned in a posting somewhere - 1-800-537-TEST - BLOOD TEST KITS by mail (it might be they mail to your doctor) - located in Buffalo, NY.

[gf4life]

Aldo, I found where I read the information. It was in Danna Korn's book ,"Wheat Free, Worry Free". This is what it says:

A disaccharide intolerance is a manifestation of carbohydrate malabsorbtion.  Disaccharides are sugars that include lactose (milk sugar), sucrose (well known as table sugard and syrups), and maltose (a near-fully digested sugar from starch, such as bread).  The corresponding enzymes lactase, sucrase, and maltase are required for digesting each of these disaccharides/sugars.  When these enzymes are absent or lacking, you develop varying degrees of disaccharide intolerance.

The part of the villi in which these enzymes are located influences tolerance of the different disaccharides.  Lactase is stored in the tips of the villi, while sucrase is located in the center, and maltase is at the base.  The more extensive your villous atrophy, the more likely you are to experience disaccharide intolerance involving all the sugars.

I do remember reading somewhere about fructose intolerance, but it must have been somewhere else. I'll see if I can find it.

Phil, I'm not surprised that they said IBS without testing you for other things. I'm sorry that you had to go through so much. I hope that you are able to start feeling a lot better soon. I am also very much on edge when I am on gluten, and I do seem to be able to experience a much more calm outlook on my life when I am gluten-free for a while. As I don't ever plan on going back on gluten again for more testing, I am looking forward to the benefits of the gluten-free lifestyle.

I was wondering about your other family members, and if any of them are thinking of being tested? It is hereditary and so although the gene can be passed from a perent who has not gotten sick fromthe disease, chances are that more that just you would have gotten the gene and is sick. Many people actually are walking around with an active case of celiac disease and don't even know it. Many don't have typical symptoms, and even some don't have any symptoms. Just something to think about. Your family sounds like they are very supportive. I would hate to see any of them go undiagnosed like you did for so long. I guess technically you are still undiagnosed, but sometimes the medical field forces us to self diagnose. I'm not really sure why so many just refuse to even consider celiac disease as a real disease. Most doctors still think it is a rare disease. I was also told stress/IBS for years. I do believe my mother was the one who had celiac disease, but she passed away (at age 44!) about 7 years ago, so it is now all her children who need to be tested. I am the first, my older sister is trying to get tested, and the other 5 are either not in a position to be tested, or I can't get a hold of them to pass on the information. There are 4 different fathers involved in our family of 7 kids, but all the same mother. So assuming it came from my mom, then we all have the same chance of getting it. I can look back a few generations and see that all of the women on my mothers side had lots of health problems that could be celiac disease. There weren't any boys until my moms generation, and a few of them have many symptoms as well. Don't you just love genetics. So many things that can go wrong, it is amazing we all turn out somewhat normal!

Well, I'd better stop now. God bless,

Mariann

[DLayman]

aldociao & phil.. If you are finding that the regular gluten free diet is not cutting it for you, you might want to concider the specific carbohydrate diet. It takes out disacchrides and other carbs that are hard to digest and gives your body only items that it can handle.. items that are pretty much already broken down for you so your body does not have to do the work and can simply absorb the foods and heal..

that is the simple explaination.. for more see... www.breakingtheviciouscycle.info or www.pecanbread.com

Check it out!

[VAGuy]

re: other family members - an uncle (mom's side) who passed away a couple years ago had a lot of gastro probs - she wonders if he had celiac disease - haven't heard of other people up there with the problem though. I am the last male of my father's side of the family, no children, only relatives I know of are the wife of his half brother and son, daughter/offspring of another brother whereabouts unknow. My sister and mom do not seem to have the problem. Guess I'm just a lucky guy.

I think I owe Mary Lynn Duvall, RD a very nice thank you letter; if it hadn't been for her who knows what would have happened to me. In 1980 when this began I was 28/135 lbs - summer '03/age 51 scale read 119 lbs and I just freaked out - began gluten-free diet at end of November - my weight today 121 lbs! The diet really does help/work.

The information you gave about sugars was great - now I understand why I've been avoiding them.

Thanks again, Phil

[VAGuy]

to: DLayman - thanks for info, I'm rounding up all I can - and I'll try about anything at this point.

[aldociao]

Phil,

Thanks for info on Immco. I am in the process of deciding what tests to take and which lab to use. After months of being content with being self-diagnosed (2 months), I awoke yesterday morning knowing that I was going for the tests. My unconscious (higher ?) mind obviously went through the pros and cons while I was asleep, and not bothering to consult with me (my waking, and obviously less aware mind) it decided the matter for me. It felt right, and after being baffled a bit by this turnaround, I realized that it probably was the result of a number of things that have happened lately. First, the good advice given to me by posters on this board, including Mariann who is posting on this thread, and the realization that a number of family members might have celiac disease as well, and if I do not have medical confirmation of my condition then it will be difficult to convince them to be tested. As it is, they doubt that I have "this rare disease." Because of this, I think I will need to include the gene test, as well. Hang in there with the diet. I lost a lot of weight as you did, 155 to 106 in a few months, and was misdiagnosed. But if it all ends well, then that is what counts.

Mariann,

Thanks for the sugar information. I believe it was your post, or maybe Sarah's, that got me to eliminate fruit from my breakfasts a while ago because of similar information on the digestion of sugars in the small intestine. For what it is worth, and I know we tend to react differently, by eliminating my usual fruit with breakfast (usually two of the following: grapefruit, apple, kiwi, pineapple, orange, and grapes--if I can get organic cheaply enough) my flatulence (and maybe farting is the more apt term here for what was being gased out) has almost disappeared. Not only after breakfast but throughout the day. I could not understand that reaction because I waited at least 20-30 minutes before following up with other foods: like Rice and Shine, Bob's Cereal Mix, Quinoa Flakes, etc.. having read that by that time the fruit will have begun digesting in the intestines, and therefore causing no fermentation problems in the stomach. But knowing now that digestion of sugars depends on a healthy intestinal tract, I'm not surprised with the noisy results. I miss the fruit and will try to reintroduce them later on. I thought I might give it a trial go but I think not. I will wait another month or so.

DLayman,

Thanks for the information on the Specific Carbohydrate Diet. I have read on these posts about this diet without too much interest. But now I think it might be just what my intestines need: easy to digest carbs for their overworked and damaged villi. And thanks also for the sites you mentioned.

Aldo