Greetings from Atlanta---I am new

[drdeb]

Hello to all,

First let me say thank you for all of the information I am obtaining here!
I hope I will not bore you with all of my case history. I am not sure what is and is not relevant so I am including any possibility.

I recently turned 57. I was diagnosed with MC last Feb after an upper and lower GI. The Celiac test came back negative. I have had diarrhea (usually on) but on occasion it stopped since the birth of my only son when I was 31. They said it was hiatal hernia and IBS. Nothing worked for it! So finally they diagnosed it and put me on the Pepto Bismal treatment. My experience was similar to what I have read here.

My medical history includes as a child allergies to wheat and eggs. I developed a rash. I was told I grew out of that.Tonsils and adnoids removed at age 3. A number of ear infections and I have had a hearing problem for at least 20 years. When I was 28, I experienced allergy and rhinitis problems. I took allergy shots for dust, mold, mildew and allergy to dogs. I stopped the shots after the birth of my son when I was 31. Sulfa drugs also give me a rash. When I was 27, I had surgery for a rectal fistula. They did not know the cause. When I was 29, they discovered endometriosis. I was on Danacrin for 6 months. Then I accidentally got pregnant. My son was born a month late. He was healthy with the exception of Meconium staining and hypospadias. When I was 36, I was diagnosed with Immune Thromobcytopenic (ITP)-low platelet counts- and was given steroids. This seemed to cure that disease. I was told I have osteoporosis-early menopause they said because of the Danacrin and the fact that my body thought I was in menopause. For a few years now I have been taking Alendronate Sodium tablets weekly for it. (At age 33-35, I broke both ankles and my knee within a 2 year period for no apparent reason-just tripped) I read the article Tex recommended and I have decided that I am going to stop taking this osteoporosis drug. Since then, my only real problems were the diarrhea and bicep and rotator cuff (I had surgery, March, 2007 to cure that) In May, 2008, I had an upper eye lift and a mini tummy tuck. The only problem I have had since surgery is that my upper eyes itch, on occasion. However, applying fungus salve seems to help.

It has been raining on a nearly daily basis in Atlanta for about 3 weeks. I now suspect that the rain-mold and mildew might be part of the reason I got sick with a bad cold right before Christmas. I have Kaiser Permanente HMO and I saw my doctor on Friday. She seems to think I now have a sinus infection and prescribed Cefuroxime Axetil 500 MG X 2 per day for 10 days. I am beginning to feel slightly better. Blood work was done. The results of the Basic Metabolic Panel were in the standard range. The results of the Complete Blood Count Without Differential were not so good. My RBC, AUTO was 4.17 normal is 4.20-5.40 10*6uL my count was Low. My MCV was 99.5 normal is 81.0-99.0 fL my count was High. My MCH was 33.7 normal is 27.0-31.0 pg my count was High. From what I can determine by searching online, this appears to be anemia folate and B12.

My doctor was far more concerned about the skin ailments I have began to experience since October. That month, I went to Florida (humid and hot) with a friend. A couple of weeks after I returned, a circle about the size of a nickel appeared on my right wrist. My friends said it was ringworm-and we ascertained that I got the fungus from the trip. I treated it with fungus cream and it went away after about 3 weeks. Last Sunday, as I was driving through town, my right arm began to really burn. I looked down and there were blisters in the shape of a circle, again on the inside of my right arm but this time about half way up. A couple of days later, a red pimple type growth appeared on my left breast. The skin around it was striated and red. I went to a local health food store that is good with diagnosis. They recommended an anti-fungal salve by Healin Hollers, a yeast-cleanse by Solaray and Jarro-Dophilus EPS enhanced probiotic system. I am taking all of these things. Yet the Kaiser doctor said it is not ring worm because it burns rather than itches. She has ordered biopsies next week (and scared me by saying this does not look good. I have no idea what is on your skin.) From what I can determine (I am not an MD-a Ph.D.-retired college professor just seeking the truth) it appears my challenges might be related to celiac disease. I wonder if my skin condition is dermatitis hepatisformis. I am curious to see what you think. I also have been experiencing a trigger finger when I wake up in the morning. This has been going on for a few months.

Yesterday, rather than Pepto bismol, I tried your BRAT approach. I only consumed bananas, white rice, organic apple sauce and unsweetened tea. AMAZING! Today I had 3 movements within 2 hours but they were like pudding VS uncontrollable diarrhea. Also, the red striation on my left breast is gone. The trigger finger also feels better.

My initial questions for you are as follows:
Does stress (I have had a lot lately-I am a 3 year widow with a 26 year old back at home-he lost his job, two houses that have been for sale for over 2 years-all the drama of a girlfriend going through a nasty divorce)----affect my MC? It really appears that this is the case. I really think the MC is depressing me-or perhaps it is the anemia. I think I know the answer but would love to hear from you.


What do I do now in order to keep the diarrhea from coming back? The thought of eating BRAT only food forever doesn't seem appealing. Should I do it for more days and then start gradually re-introducing food?

I have little faith in the medical profession. My retirement insurance is through Kaiser so I have little choice as to the assistance I receive. However, they do what I request (usually). I would really appreciate any information you think I should ask when I go back to the doctor. If you can suggest tests or meds or whatever, I will request them.

I am a positive happy person by nature and I am so glad I feel better today (after BRAT) than I have been feeling.

The medical profession should be ashamed to prescribe Pepto Bismol VS diet. Again, thanks so much to all of you. Thanks in advance for your assistance.

Deb[/b]

[JLH]

Deb. I know Tex will be along soon to answer your questions. Glad you are doing a bit better.

In the meantime, read as much as you can here on the PP. Also, you may want to check out www.enterolab.com

[JLH]

MC is quite depressing...........

Here's a thread that Tex started http://www.perskyfarms.com/phpBB2/viewt ... depression

You can search this (PP) site by using the site search at the top of the page after the FAQ and Rules, not the Google search.

[drdeb]

Hi Joan,
Thanks so much for your reply. It is good to read the information re depression. And honestly I am feeling much happier and healthier today.
Deb

[Jan]

Deb,

I know you will find a lot of the answers you are searching for here. This is a great group of folks from lots of different backgrounds who all help each other.

I don't have as much problems with gluten as some of the others so I won't address that area.

I do know that stress, for me, affects my bowels. I may not get full blown D but I go more often and it's softer.

I was glad to hear you had great success on the BRAT. It is a place to start. There is also life after this. I would suggest you keep a food diary. This will also help you trace foods that don't do well with you. Until your gut heals, you might want to limit high fiber food and raw fruits and veggies. I eat most of my veggies well cooked. I save the water for soups so I still can get the nutrition that might be missing. Also, there are a lot on this Board who can't tolerate dairy. If you don't have a problem with soy, soy milk is a good alternative. I think it tastes better than rice milk.

This will be a journey of experimentation. Know that it won't be smooth or straight either. We've all to backtrack and take detours to get to where we are today.

Good luck to you,
Jan

[drdeb]

Thanks so much for the welcome.

I am going to keep a food diary. Today I had coffee with sweet and low and it did not seem to bother me. My favorite food is cheese and I am going to stay clear of it right now because of the mold allergy. I am staying away from raw fruits and veggies except for applesauce and bananas.
Thanks again,
Deb

[tex]

Hi Deb,

Welcome to our internet family. Wow! You have a lot of issues to deal with, and yes, stress most definitely can/will exacerbate your MC symptoms, and can even trigger an episode. We have found that MC and depression seem to go hand in hand. (If MC doesn't depress you, chances are, nothing will).

I suspect that your hunch is correct, and that you are probably short on folic acid and B-12. That's a somewhat common problem with gluten-sensitive enteropathy, due to the associated malabsorption issues. Since anemia tends to rob one's energy, that certainly can add to any problems with depression.

Since you were allergic to wheat early in life, frankly, I'm kind of surprised that you do not test positive to fully-developed celiac disease. In that respect, you are like many of us here, in that other than a few members who are also celiacs, we always test negative to the classic celiac diagnostic tests, even though most of us are highly gluten sensitive.

It does indeed seem to me that the rash that you have been experiencing may well be dermatitis herpetiformis. Many doctors seem to be unable to recognize it, for some reason or other, and if curtailing your gluten intake, prevents the rash from reappearing, that's pretty strong evidence that you are sensitive to gluten. If that's the case, then you already know how to proceed - follow the GF diet. You've already received some good information on diet for MC in general, from Jan, so I won't go into any more detail on the GF part, here.

Dr. Kenneth Fine, is a GI doc who has MC himself, and he is the founder of Enterolab. He developed the Pepto-Bismol treatment early on in his research, and it was the first treatment that he recommended for MC, (in conjunction with the GF diet), because in many cases, it can lead to remission faster than the diet alone. Dr. Fine stopped recommending the Pepto treatment several years ago, because there seems to be a fairly high number of people who react adversely to it. The specialty segment of the medical profession known as the gastrointestinal docs, (bless their slow-to-adapt-to-new-technology hearts), seem to have recently discovered that now-obsolete treatment, and some of them are just now getting around to prescribing it to treat MC. Unfortunately, (thanks to their ignorance), they "know" that gluten sensitivity is not possible, unless a patient has fully-developed celiac disease, so they fail to mention to their MC patients that a GF diet must accompany the Pepto treatment. Consequently, a few days after the Pepto treatment is ended, most patients will relapse. Also, a few of them fail to mention that the Pepto treatment can only be used for about 8 weeks, at the prescribed rate, because of the risk of a toxic buildup of bismuth. How these doctors "know" that diet has nothing to do with MC, is beyond me, since there is absolutely no evidence to support their position. On the contrary, the diet works, but it hasn't been documented in the hallowed halls of medicine, yet, so most of the GI docs are still clueless.

Incidentally, IBS is doctor-speak for, "I don't have the foggiest idea of what's wrong with you". It's the default diagnosis, when nothing else can be found. In almost every case, though, a biopsy is the primary difference between a diagnosis of IBS, and MC.

If you want to try some tests that are actually reliable, the only ones that will detect the type of gluten sensitivity that we have, are offered by Enterolab, in Dallas, and they can be found at the link that Joan provided above. The tests that Enterolab offers are several orders of magnitude more accurate than the serum tests, for reliably detecting food intolerances. The HLA-DQ gene molecular tests offered by Enterolab are also somewhat enlightening, for many of us.

Good luck on your recovery. MC cannot be cured, but it's symptoms can certainly be controlled. At this point in the game, though, we each have to develop our own treatment plan, because when it comes to MC, most GI docs are still standing at the starting gate, scratching their heads.

Again, welcome aboard,
Tex (Wayne)

[drdeb]

Hi Wayne,

Thanks so much for your thorough answers to my questions. Knowing Kaiser, they probably won't think to biopsy for dermatitis hepatiformis. But I am hopeful that they will be able to rule out dastardly diseases which will make me feel much better. Also, I researched the drug used for it and I do not like the sounds of the side effects. I think I will try an antibacterial ointment. The sore on my arm really hurts and burns.

I noted your foods to avoid and I really appreciate your recommendations. And actually skim milk has bothered me in the past. Another irritant I have discovered is red wine. I already have a couple of Bette Hagman's Gluten-Free cookbooks. The problem is I don't cook much. That will need to be my New Year's resolution! I downloaded the shopping list from the celiac website. It will be useful.

Do you think the folic acid and B-12 issues will go away with the non-gluten diet or should I ask Kaiser to prescribe meds? is there anything else I need to discuss or ask for in addition to telling them I am discontinuing the Alendronate Sodium?

You and this site are a God send. I can't thank you enough.

With Appreciation

Deb

[barbaranoela]

DEB-----I couldnt even imagine what U have been thru----but U surely have been given advice and U seem to be ready to attack your attacking issues----

I can add that I wish U the very best in sorting all your issues--

BY GOLLY----that good old STRESS can drag U into the ground--

I am so sorry for what U have been thru--lets trust that things will get better

Barbara

PS. were U tested for LUPUS--(thinking of the rash)

[drdeb]

It means so much to know that all of you are here and that you can relate to this crazy challenge I am experiencing.

The difference in the way I feel on my second BRAT day is amazing. I am optimistic now. Re: lupus, no I never have been tested. However, since I don't constantly have a rash, I am going to rule it out and affirm that my body is becoming 100% healthy.

Thanks again for taking time to write
Deb

[tex]

Deb,

The DH should resolve completely on the GF diet, (if it is indeed DH), and usually it responds to the diet rather promptly, (IOW, it usually resolves faster than the intestinal damage, I believe).

If you do have small intestinal damage, (it won't be the type tested for with the upper endoscopy, i. e., it won't necessarily be in the form of villous atrophy), but until it has time to heal, the malabsorption problem will continue, and it will prevent most fat-soluble nutrients from being absorbed. Most vitamins are fat soluble, of course. Most of us take a sublingual form of B-12, together with a folate supplement, in a single lozenge. In case you're not familiar with them, sublingual lozenges are designed to dissolve under the tongue, where they are readily absorbed directly into the bloodstream, thus circumventing the malabsorption problem in the small intestine. The ones I've used contain 1,000 IU of B-12, and 400 IU of folic acid, for an ideal balance.

After your gut heals, the malabsorption problem will slowly fade away.

We are fortunate to have a professional chef on the board, and she has posted at least a couple hundred tested, (and delicious), GF recipes in this forum:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

Other members have added their own great GF recipes there, as well.

You're most welcome,
Wayne

[drdeb]

I will add the sublingual B-12 to my shopping list. I will also check out the recipes.
Thanks again,
Deb

[G'ma Mary]

Deb;

Welcome to our on-line family!!! I'm so sorry for the reason you needed to look for us, but so happy you were able to locate us.

I seem to be the main one on this site who has used (and continues to if I have problems) the BRAT diet, so let me respond to your question about it. When I have used it, I stay on it until I am feeling enough better that I am ready to venture off it. At that point, I add one (or possibly 2 related) new foods per day, noting any reaction I have to them. As others have mentioned, stay as much as possible with well cooked fruits and veggies. When I'm reacting (which is extremely rare now), the only raws fruit or veggie I eat is bananas - those bother some, but not me. Also, beware of dairy. Don't be in a hurry to add that beloved cheese into your diet. I don't have dairy issues, but if I am reacting, it doesn't do me any good at all. I'm really happy you are experiencing relief with this very limited diet.

As others have said, stress definitely has an effect on us. There was a time when I had been diagnosed but was not on any type of treatment at all. I left my high-stress job and worked for 2 months at a summer camp with almost no stress, then returned home to a new job and a Gluten Free diet. During the 2 months of reducing my stress level, I saw my D go from 20-25 times per day of explosive D down to 5-10 times per day with minimal, but some, control! This was with NO TREATMENT AT ALL - only stress reduction! Most of the time it is very difficult (if not impossible) to reduce our stress, but anything that can be done is helpful.

You mentioned not doing much cooking. It seems to be more and more possible to find ready-made foods that are gluten free and even dairy free, and restaurants are becoming more aware of our issues. Making the switch is difficult any way you decide to do so, but the choices are so much more than when I first went on it only 6 yrs ago! I've always enjoyed cooking, but have found that it is even more fun now to look for new recipes - I see this diet as a challenge rather than a problem! So, do what you need to in order to find relief for yourself, and ask us any questions you have. In addition to all the wonderful recipes you can find here, many of us can help you find ready-made products &/or restaurants if you need it.

Once again, welcome! Please feel free to ask us any questions you have, or just come here to vent when you feel the need.

Blessings;
G'ma Mary

[drdeb]

I am glad to know the BRAT diet has helped you. I am feeling so much better already on day 2! Today I added corn chips, salsa and coffee to the banana I had. I plan to have some applesauce before bed. So far, so good. No problems since this morning and then so much better than it has been. If on any morning (when it is the worst for me potty-wise) I have the D again, I intend to only eat BRAT food for that day.

I have been browsing through the recipes. I can cook, just haven't done so lately since there is just me. However, my son will eat anything so at least he can now help me eat what I cook.

I asked myself what I had been eating when it got so bad this last time. My list included a lot of cheese, red wine, skim milk, sandwiches and the like at holiday parties. I am determined to exclude all alcohol and dairy products until my D is completely gone, my skin is healed, and my infection is well. And I do not intend to ingest gluten products ever again in the future! It is good to be able to read ingredients for items like brands of mayonnaise (for chicken and tuna salad) and to see that there are recipes for mock mayonnaise and mock milk on this site should I need them. Hopefully following this diet will also help me get rid of the pounds I gained over the holiday.

Your grandchildren are gorgeous. You are truly blessed.
Thanks again
Deb

[Jan]

Deb,

I saw what you had added since you were feeling better. I thought I would share my experience with you. I drink coffee and some tea. One of the first things I gave up was caffeniated drinks. I did wean down rather than cold turkey so I wouldn't get the headaches, etc. That did help a little with my D. The only problem this has created is when I eat out. Here in Texas ice tea seems to be the drink of choice. Well, no place offers decaf ice tea. My local chinese restaurant does bring hot water and let me use my own tea bags.

Also when I'm having problems I really cut back on my spices. I love lots of onion, garlic, peppers and tomatoes. These go back on the shelf until I am close to normal again.

Jan