Still in distress

[Syl]

Hi all, well I have tried to manage this LC with diet and Pepto. Seems like things were firming up slightly, but this afternoon....the familiar general sick feeling washed over me followed by the total watery D followed by just water. Afterwards, felt pretty good. I had tried several days of Pepto which in the past worked fine when I needed it in small quantity. This time, in larger quantity, it did nothing. Discontinued it. Tonight I took my first Asacol dose as I got ahold of a sample quantity. If this doesn't work, is there any place to get generic Entocort? How about Canada? Anybody tried that route? I am just looking ahead. I am down to eating white rice. This reaction scares you so you don't want to try eating anything. Luckily, I could lose 30 # or so and still be o.k. Tomorrow I plan to add chicken or pork to the rice. How about a multi-vitamin? Any help appreciated, Sylvia

[JLH]

http://www.perskyfarms.com/phpBB2/viewt ... t=vitamins

Tex will help in the morning, I'm sure.

I take a multi-vitamin, sublingual B-12 and Vit. D-3 which I learned from Tex. I also take Vit. C and Magnesium which I found I needed from a Spectra Cell Test. Whew, I'm gaining on Suzanne Sommers...except I won't take bio-idendical hormones. I'd like to but I had breast cancer and I'm scared of them. There are PP who do take them.

There is a PP search feature right after FAQs and Rules.

[JLH]

Syl, I hate to say this but suspect soy next........That's what happened to me. I did fine going GF (I'd been dairy free for decades) for a month or two and then started having problems again. I suspected soy (beans) because of the experiences of the PP. My soy intolerance was confirmed by EnteroLab testing.

[Syl]

Hi Joan, I notice that a lot of the gluten-free items I just purchased on-line do contain soy, an ingredient I don't think I ate much of before this flare. I also have soy milk in the fridge plus some almond milk that has some kind of soy in it. My GF spaghetti also has soy flour as does some of the multitude of mixes I bought. Thanx for the tip. I am going to try a more limited diet. Sylvia

[JLH]

Yes, I had to throw out all my Van's GF products (waffles and French toast) when I had my relapse that turned out to be from soy.

Tex says that about half of us are intolerant of soy.........I hate that intolerance the most.

[ant]

Dear Sylvia

So sorry you are still suffering D attacks. For me, once I started a combined treatment of diet and Entocort, it took some time for my gut inflammation to calm down to a tolerable level. Over the last 7 months there have been good and bad times, but the trend over time is gradual improvement. What I am trying to say is that it is not unusual to have relapses like you are having now but still be on a long term mend.

You ask if there was any place to get generic Entocort. If you check out this string of post you will find a discussion

http://www.perskyfarms.com/phpBB2/viewt ... ight=budez

The website for the generic, which is called Budez CR 3mg, is as follows

http://www.alldaychemist.com

Just scroll for the Entocort brand and you will find their generic. I have successfully ordered from them via the internet. The package was sent from India via US to Hong Kong and took about three weeks but I got it and was able to communicate with the company on its shipping progress.

Another way of ordering branded Entocort, which I have not tried is via

http://www.inhousepharmacy.com

Hope this is useful and you start to feel better soon, love Ant

[tex]

Sylvia,

It appears that your questions have already been addressed, and I agree with everything posted here.

Tex

[Stanz]

Hi Sylvia,

It's been awhile since I've had a day off and time to write, but I've read everything you've posted and your history seems very similar to mine. I quit eating gluten in August, was dx w/MC - both LC and CC in Oct. I found PP then and had the Enterolab tests done and my results are posted on this site - I got one GS gene from each parent.

I did not want to do Enterocort and w/the help of my ND we came up with this:

2 rounded Tsp. Glutamine Powder - 3 times a day (Vital Nutrients)
2 PB 8 Pro-Biotic Acidophilus (Nutrition Now)
2 Loperamide Hydrochloride – 2 mg. /3 times a day (Kirkland Brand)
1 Proboulardi 2 times a day (Metagenics)
2 Vitamin D3 (2000 I.U.)
1 Tbsp. Organic Coconut Oil (Aunt Patty’s)

Within a very short time my D stopped and has not returned except for when I've been accidentally glutened or under extreme stress. I now take Loperamide ONLY if my BM's are getting soft, only take 1 Proboulardi and have discontinued the Coconut Oil. I have also been taking BCQ by Vital Nutrients for years. It contains Boswellia (200 mg) and I've seen lots of discussion recently about that here, it also contains 100 mg of Bromelain, 200 mg Curcuma, and 100 mg of Quercitin and I take 3 of these a day. (I started this when I began having Prolotherapy for my wrist/cartilage damage and it is a great pain reliever).

I truly believe that it is the L-Glutamine that has healed my gut. There was an analogy I read that I think Tex posted and maybe I've added creative license in this description, but the analogy was that our small intestine is segmented similarly to a vacuum cleaner hose and the segments are separated by a groutlike substance and the undigested gluten eats that away and provides a hiding place for bacteria - which is why so many of us also have skin issues, frequent UTI's, etc. This is my favorite thread EVER on this site: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10895 Clearly bacteria plays a huge role in our illnesses.

If I take Lactaid before I eat cheese I am fine, although I rarely eat dairy. I do seem to have a "gas" reaction to crackers with soy recently. I don't often drink soy milk and never drink milk or eat ice cream unless I want to be miserable. Ice cream contains a HUGE amount of lactose that even Lactaid can't help.

As a caterer I have been familiar with gluten issues for years and now that I am also GF it seems like this has become an epidemic. On my last 2 jobs 1 of 4 people have been GF and I was the only repeat person on both jobs. That is a huge # and reflects my ND's belief that it truly is 1-4 people who have GS. Even the dog who lived at the house we were filming at was GF. Last night my husband and I were having dinner at a restaurant and at the next table we met 3 people who also had gluten issues - KNEW they had gluten issues - but they were still eating gluten - just "trying to cut down" and we all know how well that works. It's great that some States are now addressing this and hopefully will make testing of children a mandate. I'm sure the drug companies will fight it, they make their $ off the misery of people like us, there's no incentive for curing illness. I will continue to believe that most arthritis, osteoporosis, fibromyalgia, etc. are ALL forms of gluten response. Call it Crohns, IBS, IBD - whatever - it's all the same - it's an autoimmune response to a toxin.

I would truly encourage you to try the Glutamine, there is NO question in my mind that it saved me. I'd had 2 1/2 YEARS of D before I started taking it in 12/09. The only other change in my diet has been that I've been GF now for 7 months.

Connie

[Syl]

Hi Connie, thank you for your suggestions and for being part of this caring helpful family. We all know how depressing this can be, at its worst. I am going to look up the Glutamine (Vital Nutrients) and give it a try. My mother had bowel problems all her life. I didn't know what it was then, but she had a resection done twice; once with a temporary colostomy, and she called it ulcerative colitis. Late in her life, she told me she had Crohns, and she was determined to eat only bread/frozen meatball sandwiches and coffee. She would then run to the bathroom and dump. She died at 84. Her mother died in a hospital from what the family said was uncontrollable D. Just wasted away. My only child, a daughter, has Crohns; but it only flares up once in a blue moon, and she eats everything. Seems there is an inherited weakness in the bowel running thru my family. Hope things progress in a positive direction for you, Sylvia

[Stanz]

Sounds like the classic pattern of gluten issues that are genetic. Mom died of stomach cancer, paternal GF of bowel issues misdiagnosed as TB, 2 siblings of colon cancer. My oldest daughter has IBS and has been on the Specific Carbohydrate Diet for a long time. She has more sensitivities than I do. Bowel problems are EVERYWHERE in my family history, cancer, resections, Crohn's, IBS, IBD - it's all the same thing. I am the only one who has been genetically tested so far and I'm the baby at 60.

I hope your daughter and you can be genetically tested. I fought the whole idea of being GF for a long time with my daughter and my ND after my blood tests for gluten were negative. Everything has improved since I went completely GF. Glutamine has been a lifesaver. I have had periods of depression all my life - it's as if a cloud has lifted.