Sequel to 'Saying Hello' post; my current MC situation

[kimpatt]

So, I sent a long reply to those of you who'd replied on my 'Hello' post and managed to delete it! Here goes again! BTW, if this post is in the wrong spot on the boards, feel free to move it or tell me where to post my general whinings :)

Here are my replies:

Tex, I've not changed soaps, detergents, etc. Like Mary Beth mentioned, I do think its part of the GI issues. The cracking fingertips, sensitive facial & private areas seem to occur WITH the GI flare... Regarding the antihist, is Singulair one of the group that you recommended. My allergist/GI who checked me in reference to Eosinophilic Gastroenteritis recommended it, saying he didn't think it would help much, but that it may, and with its low-profile of side effects, I did try it. I *think* it helped, but again, I can't be sure. I have some on hand and will take it for the next month or so and see... Has anyone else been helped by an antihist?

Regarding meds, Entocort is really the only steroid I'd consider, and I am strongly considering it now. As one who always tries very hard to avoid taking meds, I really feel that I might be ready for it.

Tex, you wrote:
I don't understand why you feel that something other than food intolerances may be causing your symptoms. The odds are extremely high that you have not eliminated all of your intolerances from your diet, and as long as even one intolerance remains, the diet will be ineffective, and your symptoms will continue.

I guess I feel this way due to the inconsistency of my symptoms. The only time I felt good (and still had a bit of constipation, due I think, to the 24* yogurt) was on the SCD. I cannot commit the time that the diet required in order to do that again. Plus, it was so limiting that I really felt I was missing out often.
There are times (months at a stretch) when I feel pretty good on a more liberal diet. This 'more liberal diet' I speak of is: NO gluten, minimal dairy & soy, moderate sugar. Those are my intolerances. I also have the 'allergies': hazelnuts, mustard, corn, lettuce, broccoli, celery, squash, watermelon, oranges, & a few others I can't even think of at present as I type quickly. Avoiding my intolerances seems more important than avoiding my allergies. (My symptoms seem more related to my intolerances). On a more liberal diet, I will also sometimes be less careful about broccoli or squash. So, often I feel pretty good on this diet. Then, there are times when I'm being very strict to avoid gluten, dairy, soy, corn & all allergies, and I will still feel awful. I know you'd say this means that there are still more intolerances/allergies to find out, but honestly, I dont' think I can deal with any more restriction!!

My history inicludes a 15 year eating disorder battle with lots of emotional pain where I restricted my foods down to include only diet foods (yuck!) or binge foods (when I'd starved myself into a binge). You'd look at my diet then and say that the GI symptoms I was having then (not as severe as today) were totally explainable. It was really a deplorable situation. After my marriage, I began to heal from all of those issues, and found *delightful freedom* in eating in moderation all sorts of foods that had been off-limits. The focus changed from worrying about every pound (& morsel I'd put in my mouth) to feeding my body well so that I could maximally enjoy life...and eating! It was lovely! Then in 2004, here comes colitis, and now I'm faced with having to do all of these restrictions again. It really brings back the past and when I'm on 'high alert' with my food, I get so obsessive...and even at that, the obsession doesn't seem to pay off as I still feel bad.

With our kids now, I don't have the time to spend hours in the kitchen making all of this food from scratch (or on the computer searching for info, recipes, etc.). As you noted, Tex, of course not feeling well is no fun either, and obviously I'll have to do what I can to feel 'good enough' to enjoy my life & feel I have the energy to be a decent parent!

When I was being so restrictive I often felt depressed. Whether this was from feeling so stressed from trying to fit in all of the cooking/food preparing/research or from feeling I was missing out on several foods I still wanted and social situations, I don't know.

I've eliminated the raw cow's milk, though I do hope to be able to do the raw goat's milk. We'll see. I've used Hempmilk before & will use it again. Its an improvement over rice/almond milk, but it just doesn't compare to the real thing. Man, that raw cow's milk was a treat!

Mary Beth, my 4 month old IS a bit fussy, but I feel like it's from teething. He's always chewing his hand. Who knows though? I don't know if I have leaky gut; would just basic 'colitis' necessarily afffect him through my milk?

So, what do you think is the least restrictive place to start from with trying to feel good? Like I said, I've stopped cow's milk. I think I'll wait a few weeks and see if that alone will do the trick. If not, I'll get more fastidious about soy/dairy. As I mentioned hard cheeses had seemed ok for me for awhile; I get trace soy in the occasional baked good I eat from the co-op. I'd been eating corn (an allergy) maybe once per week & had been doing fine; whether this was my post-partum remission or not, I don't know. That will be the next thing I'll cut out, along with all other 'allergy foods'.

I really want to do this in the least restrictive way possible. I know 'elimination diets' are usually done from a 'safe diet', with one adding in a food to see the response. I hope it will stilll be helpful for me to start where I am & take away one suspected food at a time...

Thanks again for your help and thoughts...

[tex]

Hi Kimberley,

No, Singulair is montelukast, which is a leukotiene inhibitor. Leukotrienes are a different breed of cat. As you are probably aware, when mast cells are activated, they release granules that contain histamine, serotonin, heparin, cytokines, etc. They also release prostaglandin, and leukotreine. Many of the newer asthma remedies, seem to be based on leukotreine inhibitors. It's possible that Singulair might provide some benefits for you, but it is not a histamine antagonist - it only inhibits the release or action of leukotrienes.

The "low risk of side effects" may have been based on early results in trials, (it's a fairly new product). Since then, certain risks have been discovered in patients taking Singulair. If you decide to try it, (again), be aware that the FDA has issued an advisory about certain neurological risks connected with taking leukotiene inhibitors. This doesn't mean that everyone will suffer these side effects, is simply means that the risk exists. Since you've taken it previously without any apparent problems, this warning probably wouldn't apply to you.

http://www.drugs.com/fda/leukotriene-in ... 12533.html

Dee has had good results from taking antihistamines, I believe, after she began to develop symptoms that suggested mast cell involvement. I'm not sure if she will see your post and respond to it, though, because several of her family members are having serious medical issues, and so she is not regularly posting, right now.

I guess I feel this way due to the inconsistency of my symptoms. The only time I felt good (and still had a bit of constipation, due I think, to the 24* yogurt) was on the SCD. I cannot commit the time that the diet required in order to do that again. Plus, it was so limiting that I really felt I was missing out often.

The SCD's Achilles heel, (as far as MC is concerned) is that it allows diary products, (yogurt), otherwise, it's a pretty good treatment. Remember that constipation is a symptom of MC, (for some of us).

For those who are sensitive to soy, our experience, (the consensus of the membership), has been that even the tiniest amounts can cause serious D. IOW, for many of us, it's a more potent "allergen" than gluten.

Serious dieting is definitely depressing, I agree, and it's pretty clear that you're not really open to going that route. That's why I feel that Entocort may be a necessary part of your treatment, (assuming that you're not sensitive to it). It will help to "cover up" little mistakes, and occasional "indiscretions" in your diet. After you've been taking it for a while, you'll learn how far you can stray from the straight and narrow, based on the dose you're taking. IOW, with tight diet control, you might be able to remain in remission while taking only 3 mg per day, but with less strict controls, you will probably need more. Time will tell.

If you don't like it, you can always stop taking it, but we have had very few members who were unhappy with their results. The biggest issue has been with those who are intolerant of it, and therefore unable to use it.

Incidentally, I was unable to eat a lot of things, when I was reacting, (including most fruits, vegetables, corn, sugar, etc., but after my gut had a couple of years to heal, I found that I could eat most of those foods, again.

You're most welcome,
Tex