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kimpatt
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Hello! I'm new here!

Post by kimpatt »

I've been browsing your site for a week or so and had a moment to post, so here I am. I'll try to be brief in my introduction (but I'll probably fail!)

I am 31, living in Jacksonville, FL with my husband and almost two-year old. We will move in June to Charlotte, NC. I was diagnosed with MC after colonoscopy in 2004...this after about 15 years of bowel pain, gas, bloating, diarrhea, occasional constipation. While the gas/bloating seem to be usually with me, the extreme watery diarrhea has come and gone over the years. FWIW, I tried Asacol and it did not help.

I was pregnant in 2005-6 and notice a great reduction (elimination?) in my symptoms and thought I was cured :) I did notice, though, a surprisingly intense bit of upper GI pain that lasted from about 4-5 months until the end (not just heartburn, but nearly full-blown gastritis). I was not able to eat much, and as a result, gained little weight during pregnancy. When my son was 8 months old, horrendous symptoms begin. Interestingly, I resumed menstruating about 2 months after this, but I know that my female hormones were starting their resurgence prior to... (We were still breastfeeding at that point...and still are now.) I know there is a possible link between MC and estrogen...

In April 2006 I began with intense watery diarrhea, urgency, the whole bit. This seemed to morph into an upper GI complex of problems. Heartburn, early satiety, deep gnawing stomach pain, reflux, continual burping. The entire 'flare' lasted 8 weeks. Then I had a 6 week 'break'. This pattern of flare and 'break period' happened 3 times. During this time, it was noted that my peripheral eosinophils had skyrocketed. I was diagnosed with Eosinophilic Gastroenteritis/Esophagitis. This was confirmed by biopsy. The number of eosinophils in my esophagus & stomach were way more than normal. My GI suggested prednisone; I declined, wanting a 2nd opinion & haven't seen him since, nor do I care to.

Interestingly, at this same time, I tried the specific carbohydrate diet. If you're not familiar, it is NO grains/starches or starchy veggies, no dairy with lactose (so homemade yogurt fermented 24* is ok, as are some cheeses), no sugar... I ate lots of fruits and veggies and made treats from nut flours. My symptoms remitted for the most part. When I went off the diet 2 months later, it took 2 weeks until I was feeling 'uhhhh' again, and about 6 weeks until I was right back there with watery diarrhea & the whole nine yards.

I was then evaluated at the premier research center for Eosinophilic Disorders in Cinci. At this time (December 2007), I had NO eosinophils in my stomach, esophagus, but my MC diagnosis was confirmed through colonoscopy. My diagnosis of EE/EG is currently in question. I learned during this time through skin prick testing that I am allergic to wheat, corn, soy, lettuce, oranges, celery, watermelon, hazelnuts, peas, mustard, and trees.

The folks @ Cinci found it interesting that in the past 2 years I've developed really bad seasonal allergies (usually with much congestion, phlegm, sore throat, laryngitis, headache for at least a month) beginning in April. April is also when my horrid bout of GI problems began in 2006. There is growing research connecting aeroallergens to GI problems through Eosinophilic Disease....

As you can tell, I am confused!! I wan to know WHAT to do to feel better. From reading here and from assessing my improvement on the SCD I feel it is likely I am intolerant to quite a few foods. However, the SCD was so limiting, and GFCF is at least a bit more free it seems. The SCD relies heavily on nut products for all 'goodies', and it is quite heavy. If I could just introduce rice, I'd have a whole new world of choice! I had been off the SCD for a month this time before I began feeling bad enough to make changes again. I have mad the following changes: I am currently NOT eating gluten or dairy and, though I'd begun taking Pepto (2-3 tabs per day), after reading your info. from Dr. Fine, I think I will stop this and order the Enterolab tests.

I would love to just KNOW what my intolerances truly are. You all seem to not give much credence to the skin prick tests, and for good reason, I think. I had the same skin prick done 6 months apart. The first showed NO allergies (this was when I was feeling BAD). The second showed the 11 allergies listed above (when I was feeling ok).

My questions for you:

1--Have you ever had upper GI symptoms as part of your MC? What were they like?
2--Do you know of any connection between MC and high eosinophil count? (Other than the predisposition toward other autoimmune diseases)
3--Which tests from Enterolab should I get? The entire $370 panel? Whatever it takes, but it seems I'd have to order even more to look at ALL possible food intolerances
4--Any other musings on my case?

Thanks for reading....
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
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barbaranoela
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Post by barbaranoela »

Hello Kim----and with this disease there is no way that anyone can be *brief* in what they Xperience---
U surely have been threw the mill----

I can only say that I had running rapids/sometimes gritty--in my early stages of MCC----PEPTO was a no-no for me--due to the Bismuth--
Never suffered with any other symptoms--like so many here have--and U will hear from them---In that respect I consider myself very fortunate--

Asacol didnt work for me either----Colazal + Pred. were my salvation-
I am at the point--where I can say I am in *remission* --

I hope U find some *relief* and get to feeling better---

Trust me when I say--U will be getting some very *informative* replies---

Barbara :bigbighug:
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
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tex
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Post by tex »

Hi Kim,

Welcome to the board. As Barbara said, you've certainly been through some interesting "excursions" with the medical community. It's a shame that you've had to suffer so long, without being able to find a practical treatment program that "works" for you. It's generally true, though, that finding a GI doc who knows how to diagnose and successfully treat MC is a fairly tall order, as many of them seem to base their approach on obsolete information.

You obviously have already learned more about MC than the average GI doc. Most of them will deny that diet offers any benefits for colitis patients, but they are quite wrong. Many of us here, (as you have already figured out), control our symptoms by diet alone, while some use meds alone, and others use a combination of diet and meds. For most of us, avoiding gluten, casein, and possibly a few other items, depending on the individual, will allow us to remain in remission. Very, very few of us cannot tolerate rice. Of the common grains, rice seems to be the one least likely to cause problems.

To answer your questions:

1--Yes, a number of us have problems with nausea and vomiting when we are reacting, and GERD is somewhat common, also, though not all of us have those problems, obviously.

2--To be honest, we've never really discussed eosinophils, but I think that we need to research that a bit. I notice that whenever I have a CBC done, my eosinophil count is elevated, but of course, my doctor always writes it off as simply due to pollen in the air, etc, even though I don't have any clinical signs of allergies to airborne allergens.

3--A decision on which Enterolab tests to get may depend on how much money you can justify spending, since most insurance companies will not pay for stool tests, unless your doc requests the tests, (and most GI docs are still living in the dark ages, and will insist that stool tests are "worthless"). I'm not sure which insurance companies will pay for them, even if they are ordered by a doctor. These tests are fairly new, and are still somewhat limited in scope. By that I mean that there are no tests available yet for certain allergens, such as corn, which seems to bother some of us. The primary offenders though, seem to be gluten, casein, soy, eggs, and sometimes yeast, and tests for those are available. You can still get a valid gluten antibody test up to a year after you cut gluten out of your diet, but most of the other antibodies disappear from your system in a matter of a few weeks after you remove them from your diet, so you need to keep that in mind when ordering tests. The fecal fat test is good, to determine the extent of any residual intestinal damage that might be present, and many of us have found some interesting correlations between the results of the gene tests and MC. For example, anyone with double DQ-1 genes has multiple intolerances, and has much more difficulty achieving remission than anyone without that gene combination.

4--Based on what you have told us so far, I would venture to guess that fine-tuning your diet should allow you to achieve remission, and maintain it, without the use of any of the corticosteroids, (since you have indicated that you would much prefer to avoid using them.

Concerning your recently developing seasonal allergies, when I was a kid, I had asthma really bad, (I would have died one night if a doctor hadn't given me a cortisone shot - I was already turning blue). When I reached my 20's, the asthma went away, and I started having hay fever in the fall of the year, (from ragweed, and other yellow pollens). Somewhere in my early 50s, my hay fever went away. A few years later, my MC symptoms began. Obviously, our immune systems continue to evolve, though I'm not sure how common it is for the changes to be this obvious, but maybe this phenomenon has some connection with MC.

Thanks for posting, and again, welcome to our online family.

Tex
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Post by Mars »

HI Kim!

Welcome to our on-line family! You wil find so much information here - I hope you can find some hints on how to control your symptoms. Each of us are different so our "treatment" is different. Most of us have learned by trial and error and advise from each other on the board. We aren't doctors (well, one of us is) but we seem to know so much more than most of them.

Upper gastric pain is common; everything from gasteritis, GERD and upper abdominal pain in the mid-sternum has been described here by many.

Your symptoms and experiences are know by us here - I'm sure more than myself was nodding their head up and down (saying been there - done that) while reading your post. Hang in there - it can and will get better once you determine and fingure out your intolerances, remove them and follow you symptoms and responses to your changes.

Don't be afraid to ask questions - we aren't grossed out by anything here!

Again, Welcome!
Mars
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Post by annie oakley »

Welcome
Oma
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mini
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Post by mini »

Hi Kim and welcome.

Well I think the replies before me have given the information and answer I would have done. I too have had upper GI problems since the MC started mainly I would say GERD. The only thing so far that seems to have got my symptoms under control is Entocort and previous to that Predisone, it has taken 4 months of steriods to get into a state of remission after 4 years of problems. However, each one of us seems to have had different experiences as to what works for them.

Hope you find some relief soon and once again welcome. :smile:
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Post by starfire »

Welcome to the board, Kim.........
I'm always amazed when someone posts that they have had such horrible problems for such a long time but I shouldn't be since there are so many similar stories.

I was extremely lucky because I got a diagnosis quickly.

I, personally, am not controlling my MC with diet so I'm going to let the experienced members advise you on that.

Just wanted to welcome you and encourage you to read and ask questions, blow off steam, whatever you need to do. We've probably heard it before. LOL

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
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Post by m »

Kim,
Welcome. I'm one of those who took Dr. Fine's tests and controls their symptoms by diet alone. I was tested for gluten and diary initially and then tested later for soy, yeast and eggs. So I eliminated those from my diet. But later I had a really bad flare up and thought it might be due to corn so eliminated that too. I've been too scared to reintroduce it to see if it was coincidental or the real thing. That's really the only way you can tell. Eliminate something then wait quite a while then reintroduce it and if your symptoms return then there's a pretty good case for cause and effect. As far as starches I can eat rice, buckwheat, tapioca and potatoes. It's amazing how many things can be made out of these! I vigilant about what I eat/drink and I think it has served me well. However, should I have another bad flare I'm going right for Entocort which is a corticosteriod but acts more specifically then prednisone.

I hope you find relief soon.

m
kimpatt
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Thanks for the warm welcome!!

Post by kimpatt »

You all are wonderful!! I am so grateful to find a 'roomful' of people who are familiar with MC...who 'get it'!!

Great suggestions!! A few more questions...

As for Entocort, what are the side effects? If you have or are taking it, can you tell me a bit about your time on it?

I'm glad (wrong word?) to hear that GERD/upper GI pain is associated with MC. I WISH you all didn't have it, too, but I'd love for most of my probs to be MC & not TWO separate diseases! It seems I can better control the MC than the Eosinophilic condition we thought I had.

Are there any gluten-free, casein-free CHEESES? I bought a non-dairy one by Lisanatti (sp?) only to find it contained casein on closer inspection!

Do many of you take Immodium? As my bowel heals, I'd like to stay off of the Pepto, but I recognize I may still need some help in the D department. I'm concerned about the possibility of salicylate poisoning & also don't care for the bismuth in PB. Is Immodium generally regarded as safer?

I am also sensitive to soy, although this does NOT seem to be as big a trigger as gluten & casein. Nevertheless, what sauces do you use in place of soy or tamari when cooking?

As for milks, what do you drink for GF/CF? I have some almond milk, but it contains starch. How do I know if this is gluten-based starch? Are there any brands/types you can recommend?

I've contacted the Internist who is overseeing my care. I told the initial GI MD to take a hike; the specialists in Cinci are too busy; and this lady works with my husband and is really open to ordering whatever lab tests I think I need. Whether she orders or not, I suppose I'll do the full Gluten panel (they have the dairy test free with it). Later, I can do soy, corn, yeast.

I know to take it easy on the processed products, but I am SOOO excited to now be able to eat some of the GF Kinnikinnick & Pamela's products. Before, on the SCD, I had to make EVERYthing from scratch. Pretty time-consuming with a toddler running around, but I have a great recipe for cashew bread and date/nut/fruit 'energy bars' that are GF/CF if you'd like them...

Thanks again, y'all! I am so glad to have found you

:grin:
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
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Post by Dee »

Hi Kim & Welcome!!
I have been on Entocort for over 2 years with no problems.
Started out with the usual dose of 3-3mgs in the morning.
Now, I take 2 in the morning as a maintenance dose.
When I was first prescribed the Entocort, I took Lomotil, until the Entocort started working and I was lucky because I showed improvement within 12 days.
Go to the recipe link & you will find many helpful tips to some of your food questions.
Personally, I use the Living Harvest Hempseed milks. They work out really well for my many uses when something calls for milk, on cereal, white sauces, and mock cream soups that I use in casseroles.
Just keep asking away and someone will be here to help you & answer.

Dee~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
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Post by tex »

Hi Kim,

Unfortunately, to my knowledge, none of us has ever found any cheeses or cheese substitutes that are GF and palatable. The aged cheeses are very low in lactose, but all dairy products contain casein.

As Dee has already mentioned, quite a few of us use Lomotil or Immodium, to help get us past "bad" days when we need to travel, or otherwise can't be running to the bathroom at a moment's notice. These are relatively safe, as they have an opiate effect, and simply slow down motility, without any systemic effects. There might be a long-term risk for heavy, everyday use, since there have been a few cases of impaction due to opiates, (which can be life-threatening), but most of those were due to regular use of prescription drugs containing opiates, not OTC meds. At any rate, they don't carry any risk of a possible toxic build up of bismuth, the way that Pepto does, with long-term use, and many members here take up to eight Immodium per day, I believe, with good results.

Dee is our resident expert when it comes to GF cooking, and she has listed a recipe for GF soy sauce in the "Recipe Room", alone with many other excellent GF recipes and cooking tips. Other members have also listed some great recipes there, and we certainly encourage you, (or anyone else), to list any good recipes that you have found to be tasty and safe. The link she mentioned is here:

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

Her recipe for GF soy sauce is listed under the topic titled "Mock" Soy Sauce.

I use the same "alternative milk" as Dee, hempmilk. I use the vanilla flavor, and I like it so well that I've never tried either of the other two flavors. IMO, it tastes better than cows milk, but that's probably a personal thing. This site has a store locater, and you can order it online, (which I do), if you can't find a conveniently located store that sells it.

http://www.worldpantry.com/cgi-bin/ncom ... d2w/report

I believe the convention in labeling today, (in this country), is that if the origin of a starch is not specifically listed on the label, it is assumed to be corn. At any rate, if the starch comes from wheat, the law that went into effect on Jan 1, 2006 requires that wheat be listed on the label.

You mentioned Kinnikinnick. If you have a sweet tooth, IMO, their GF Vanilla-Dipped Donuts are the best commercial GF donuts on the market, bar none. The recipes you mentioned sound like they would be nice additions to our collection, especially the date/nut/fruit 'energy bars', since we're always looking for handy and healthy snacks.

We appreciate your input.

Tex
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Post by mle_ii »

Hi Kimberly,

I noticed in your signature that you mention you take Glutamine as a supplement. Please make sure that you find out where they get the amino acid from, sometimes it can be derived from wheat.

Back when I was reacting the most Immodium was what I used the most to help me when traveling or whe I needed to be somewhere that bathroom access was an issue. Even just having a few tablets in my pocket was enough to help relieve the stress thinking about having problems. Though lately when I've been better though feeling a little off I find I can't tollerate even the smallest dose anymore, it constipates me pretty severly now, for days sometimes, which makes things worse sometimes. I haven't taken any for a year or so now I would guess.

Mike
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Post by Dee »

Hi Kim..
I'm interested in your recipe for the energy bars.
I buy the raw organic food bars at our Vitamin Shoppe and they are expensive. To be able to make my own would be a plus for me.
When I get the craving for a candy bar, I grab one of those.
Thanks!

Dee~~
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Post by mini »

Hi Kim

The Entocort has been fantastic, no real side effects as such the first week I did have bad headaches but, they soon went, no other problems at all I would certainly recommend it for treatment. As for Immodium I was told not to use it as a regular treatment in fact to try and avoid it full stop by a consultant in A & E also from occupational health. Since taking the Entocort I have not had a problem with 'D' anyway and seemed to be able to eat anything :smile:
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Post by JJ »

Hi Kim...I also take Entocort. I have had great luck with it and no side effects. At one point, I was down to 3mg every other day, but had to up the dosage because of a stressful period in my life. I am now taking 2 3mg caps/day. I'm hoping as the stess decreases in my life, things will improve. (Norman came a calling yesterday!) I'm so glad you found us...this a a great group for support and info. Take care.....JJ
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