Newbie-MC Diagnosis in 2008

[drdebc]

Greetings to All of You!
I have had MC symptoms since the birth of my son, 30 years ago.
As a child, I was allergic to wheat and eggs.
Medically I have experienced auto immune challenges which I now realize are related to MC.
rectal fistula operation, age 24.
infertility and horrible menstrual cramps throughout life- diagnosed as endometriosis, put on Danazol (modified testosterone). Became pregnant and son was born at age 31.
ITP diagnosed at age 35. Was prescribed corticosteroids and condition was healed.
Early menopause at age 40. Took hormones for 5 years.
Ear and sinus infections and a lot of antibiotics, last 3 years.
I have been on the Wheat Belly plan for 6 months and have not lost weight.
Current conditions and treatments: MC taking Lomitil and Questran with little help for D. High blood pressure and cholestrol meds. Fotical for osteoporosis.
Based on what I have read here, I plan to start Cultrelle and Pepto Bismol tabs. Maybe that will help me. I also located a gastronomy MD who is with my insurance plan, thanks to this site. I plan to call and get an appointment tomorrow. Also, I am working with my primary MD and the suspicion that I have hypothyroidism.

My life is on hold, thanks to MC. I really want a cure and I look forward to healing my gut. However I am positive that I can turn this around and feel good!
Thanks for all of the info and support. I look forward to interacting with you and to learning more.

[CathyMe.]

Hi there and welcome! Many of us are gluten and dairy free as well as soy free. I was prescribed Entocort/budesonide in Feb. which gave me back my life and allowed me to heal my gut while I significantly changed my diet. You might want to run it by your new GI as most here have found it very helpful. I also found Liadal to be helpful, although others have not. Good luck to you! I am now off all meds and having normans everyday so there is hope!

[drdebc]

I tried Entocort a few years ago. I only took it for a few days and misguided me stopped it because it made me so hungry. I looked it up online (and unfortunately I did not check here). I flipped out when I discovered it was a form of cortisone. So I threw it in the garbage can.

I am now gaining information on this site. This time I will be open to anything that will heal my gut. I just want to have zest for life.

The Wheat Belly plan includes dairy products. That might be an aggregate, I am just not sure. The thing about my D is that it is cyclical. A couple of great weeks then BAM, here I go again. About 20% good days VS bad days. One can only change the bed sheets in the middle of the night so many times!

I WILL get well!

Thanks again for making me feel welcome on this site,
Deb

[Leah]

Welcome. You don't mention how bad your symptoms are, but the Pepto regimen has helped many people here. I was unable to take it. it makes me sick. I am one of us who used Entocort ( budesonide) for 6-7 months with major diet changes. doing pretty well now.

Besides Wheat, you don't really say much about your diet. Are you strictly gluten free? It makes a huge difference. If you are still eating dairy, that may be part of your problem. Also, if you are eating raw fruits and veggies, they usually are too rough on our systems until there is substantial healing. I am only now adding a little back in after 10 months.

Have you ever been tested for IgA deficiency? The reason I'm asking is because of the multitude of autoimmune diseases and the fact that you have had many sinus infections and being on antibiotics. I have this condition, but am lucky in the fact that i don't get infections, but I am on my third autoimmune ailment. It's important to know if you have this for blood transfusions.

Good luck with your quest to feel better.
Keep us Posted
Leah

[tex]

Hi,

Welcome to our internet family. Yes, based on your medical history, it appears that you have probably had MC for decades. In case fine-tuning your diet to eliminate any additional food sensitivities does not bring remission after a reasonable length of time, please be aware that for some individuals, certain drugs are known to be associated with the development of MC. Among many others, this includes certain beta blockers and statins.

As a group, according to a poll, we are approximately 7 times as likely to develop thyroid problems as someone in the general population, so many of us have thyroid issues, mostly hypothyroidism.

Reversing decades of damage is not easy, and it takes much longer for the intestines to heal than most GI specialists realize, but those members who are motivated, and willing to make the lifestyle changes necessary to accommodate the necessary diet changes, are almost always able to get their life back.

Again, welcome aboard, and please feel free to ask anything.

Tex

P. S. My D was cyclic, also. I cycled from C to D to Normans (our name for normal BMS, LOL), then back to C, etc. I was lucky in that sometimes I had almost as many good days as bad days.

[tlras]

Welcome to the forum!

Yes, I would try giving up the dairy as it aggravates D and is a high inflammatory food. And it sounds like you've been Gluten free for a long time. I'm currently weaning off Pepto....this is my 9th week. It has worked wonders from Day 1 but it doesn't work for everyone unfortunately. I absolutely have no side effects as well. I will be totally off it in a couple of weeks and I'm terrified as my D was every day pretty much and I don't want it back! Keeping my fingers crossed. Pepto actually suppresses the inflammation which Imodium and Lomitol do not. I do hope it works for you. Most people go the Entocort route. My WD started when my doctor put me on Beta blockers. I have Celiac as well which I've been having symptoms of that for 3 years.

As for probiotics, Culturelle would be the one I would try first. Of course, I haven't yet as some probiotics can make us worse or simply not help at all. And some have to try many different kinds to find what seems to maybe work. So let us know how you do on that and the Pepto as well.

Good luck!

Terri

[drdebc]

I have been absolutely gluten free for over 6 months. The Wheat Belly plan does include raw nuts and a small amount of dairy (especially eggs) in food preparation. It is far more strict in non-gluten products than the recipes on here. It includes coconut meal, flaxseed meal, and almond meal. Coconut milk and unflavored almond milk are used in cooking. Fruit allowance is very small and potatoes and rice are prohibited. Other than the D, I am feeling much better on this plan. After doing some reading on here, I am currently cutting out raw nuts and dairy products.

How bad is my D? Terrible as in waking up in the middle of the night to change the sheets and mattress pad. 20 or so times a day-worse during the night and the AM.

I am shifting between this site and trackyourplaque.com (Wheat Belly site).

Day 2 of 8 Pepto tabs per day and one Culturelle. I have been okay for 2 hours. Today I have eaten a grilled 1/4 of a swai (white) fish and 1/2 of a tiny sweet potato. I will keep you all posted.

Wish my gastro MDs had explained to keep doing the Pepto for 8 weeks. I was under the impression to only do it when the D was bad.

I looked up IgA symptoms and said OMG. I was recently diagnosed with Osteoma-middle ear damage. Saw 2 different ear MDs and it was determined that my profound hearing loss was the type of Osteoma that an operation could not cure. It is recommended that I correct the condition with $5000 hearing aids (still saving to purchase them). I was also advised that I will need to replace them every 5 years! So it appears I will have a $1,000 per year cost.

[tex]

Deb,

If the D doesn't let up within about 2 weeks after starting the Pepto-Bismol treatment, you may need to discontinue the probiotic. For many of us, probiotics are antagonistic, not helpful. For some, they don't matter one way or the other. Note that among the members here who have tried probiotics over the years, more people have found them to make their symptoms worse, than those who have been helped by them. I may be forgetting someone here, but I believe that I can count on the fingers of one hand, the members who have actually been substantially helped by a probiotic, just to put this into perspective.

Probiotics sound like a good idea for IBDs, and many/most GI docs tend to recommend them, but in the real world (the cold, cruel world of hard knocks), very few people with MC actually benefit from taking a probiotic. The problem is that we each create our own custom gut bacteria population very early in life. The first time we are exposed to a systemic antibiotic, that gut bacteria population is permanently altered, and it often continues to go downhill from there, as other events unfold in our life. If we could re-inoculate our intestines with that unique mix, we would be home free. Unfortunately, that's impossible, and none of the commercially-available concoctions offer anything even vaguely resembling the bacteria population pattern that each of us once had in our intestines.

Some day, someone will become filthy rich by developing and promoting a system for acquiring and preserving gut bacteria samples from the intestines of infants within the first month or two of life. This sample could be cultured and used to treat that particular individual at any time during their lifetime, if a GI disease were to develop. It would be the ultimate in effective treatments for GI issues.

Please be aware that flaxseed meal can and does act as a laxative. Flaxseed oil is fine, but the hulls on those tiny seeds have a laxative effect. Some of us cannot tolerate almonds, but we can tolerate almond butter. A few of us, (including myself), cannot even tolerate almond butter, but we can tolerate almond milk (as long as it is free of all other allergens). It's seldom as simple as it should be, because we are all different in the ways that we react to foods, drugs, diets, etc. That's why we have to constantly compare notes here, searching for the unique problems that we may have been overlooking.

It is recommended that I correct the condition with $5000 hearing aids (still saving to purchase them). I was also advised that I will need to replace them every 5 years! So it appears I will have a $1,000 per year cost.

Have you tried any cheap hearing aids before taking that plunge? The primary differences between cheap hearing aids and expensive hearing aids are the price, the fit, and the battery (in that order). Performance is usually not a primary consideration, though high-dollar hearing aids generally show slightly better performance than most cheap units (one would hope so, anyway. LOL). Customized hearing aids are horrendously overpriced. When you get into hearing aids in that price range, the lions share of the cost almost surely goes to markup and fees for services rendered. Before I would consider springing for that kind of dough, I would try one or more different units that sell for 50 bucks, or a hundred or so, depending on how many features you want (such as a custom fit, more adjustments,etc.). Hearing aids at bargain prices are commonly available at stores that cater to hunters, nature buffs, etc. You might be surprised at what they will do.

I'm not trying to imply that expensive hearing aids aren't a good solution — I'm just saying that it's more difficult to enjoy The Sound of Music, when it's costing us a dollar a note. LOL.

Tex

[Leah]

Hi Deb. I was going to say the same thing that Tex did about the probiotic. I am very close to remission and took a Culturelle ( for reasons that are not important) and was sent running to the bathroom 2-3 hours later.

Leah

[drdebc]

The only reason I was adding the probiotic was the recommendation to take 8 Peptos and I probiotic. Day 3 D stopped finally 2 hours after taking 6 Pepto (took 2 a time x 3 times) capsules. I have not taken the probiotic today. I assume I should just skip it. Day 3 is like the first 2 days. Finally stops after taking 6 of them.
Today have eaten turkey and had 2 cups of black coffee with liquid stevia.

[drdebc]

Because of my middle ear condition, I need a special sort of hearing aid. I contacted my healthcare provider (Blue Cross) and they are steering me to the least expensive option (and hopefully at a lower cost). Thanks for that recommendation. I too was concerned about the high price of the hearing aids.

On the trackyourplaqueforum, I asked Dr. Davis (author of the Wheat Belly Diet) if I should take Questran or Questran light for my D. That question now is immaterial since I am not taking the Questran. His response was very interesting. I did try kelp tabs for a number of months and it did not appear to help. My MD completed additional blood tests and I go back on Thursday. There is a functional MD in my town, I just don't want to be stuck with high out of pocket costs. In addition, there is one gastro MD (in my insurance plan) who is recommended by others on your site.

Here is Dr. Davis' reply to me:

You open up a can of worms that we might not be able to fully address here, drd.

Unfortunately, the gastroenterology community is miserably incapable/indifferent to pursuing anything that doesn't involve their scope or a prescription. I agree with our Members: Got to think about conditions like dysbiosis/bacterial overgrowth, failed CCK signaling/pancreatic insufficiency, and other conditions.

While elimination of wheat, followed by limiting junk carbohydrates, normalizing vitamin D and iodine, supplementing omega-3 fatty acids are all very powerful strategies for coronary health, they don't always undo the gastrointestinal battleground that some people develop with the standard American diet that includes wheat and sugars. A stool examination, for instance, may be necessary to make the diagnosis.

I would look for a functional medicine practitioner or naturopath before I resorted to asking a gastroenterologist.

Also, you've got a mild case of hypothyroidism, judging by your highish TSH. About 20% of people experience improvement just with supplementing iodine, e.g., 500 mcg per day from kelp tablets or other iodine supplement, while the rest have to take thyroid hormone in some form, preferably a T3/T4 combination such as Armour thyroid.

[drdebc]

Tex,
So flaxseed meal has a laxative effect? OMG could be part of the problem.
Thanks for the info,
Deb

[Zizzle]

Have you tried eliminating eggs for a while, given your childhood allergy? Just because you tolerate them now, doesn't mean they are suddenly good for you. They may be behind some of your continuing symptoms and inflammation.

[drdebc]

I have stopped eating eggs because I have the same suspicion.

[tex]

Deb,

Dr. Davis obviously has the same general opinion of GI specialists that most of us here share — that they exist primarily to sell expensive and invasive tests, and write prescriptions for powerful and expensive drugs. They're too busy (and making far too much money), to waste their valuable time advising patients on how to restore their health simply, and economically, by modifying their diet. In their defense though, I will add that it appears that most patients (present company excluded ) would rather take an expensive drug, with a high risk of Draconian side effects, than to change their diet. Some even feel that treatment by diet changes is demeaning, and not a "real" medical treatment. To them, a serious disease requires a serious treatment, and that means powerful drugs.

From the University of Maryland Medical Center:

Historically, flaxseed has been primarily used as a laxative. It is high in fiber and a gummy material called mucilage.

http://www.umm.edu/altmed/articles/flaxseed-000244.htm

Have you tried eliminating eggs for a while, given your childhood allergy? Just because you tolerate them now, doesn't mean they are suddenly good for you. They may be behind some of your continuing symptoms and inflammation.

Here's why I feel that your decision to discontinue eating eggs (at least until your digestive system has had sufficient time to heal) is a wise one: Contrary to conventional wisdom among allergists, virtually no one outgrows allergies and/or food intolerances. Quite a few people develop a tolerance for them, but when subjected to a stool test, it is clear that their immune system is still producing antibodies, and therefore, internal damage continues to accrue, despite the absence of clinical symptoms. This also applies to allergy immunotherapy techniques whereby subjects are exposed to initially small, but incrementally-increasing doses of any allergen, designed to induce tolerance of the allergen.

CONCLUSION:

Our mouse model would be useful to investigate inflammatory and regulatory mechanisms in food-induced intestinal allergies. Our results suggest potential gastrointestinal inflammation in patients undergoing OIT as continuous administration of allergenic foods, even though the therapy may induce clinical tolerance.

http://www.ncbi.nlm.nih.gov/pubmed/21714123

"OIT" in that quote refers to oral immunotherapy.

As an example, I was sensitive to casein back when I was reacting (about 10–12 years ago), but after I achieved remission, I was able to induce tolerance. I showed no clinical GI symptoms to eating any dairy products, but when I ordered an EnteroLab test for casein, almost a year ago, my test result was 24 (Any test result above 9 is a positive result.) Needless to say, all dairy products are now permanently out of my diet.

The bottom line is that there are no simple solutions to food allergies and sensitivities. The only reliable and safe solution is total avoidance (for life).

Tex