Newly Diagnosed-Grateful to Find this Site

[InTents]

Hello All-

I've been recently diagnosed with MC (LC) as of late April 2012. Needless to say, this can rock your entire world to the point of obsession. Or at least it has me. I have learned more from this board, which has been a true lifesaver, things I need to do to keep me from losing myself. I feel like I have friends here that really get it. My family doesn't and it takes everything I have to educate close friends and loved ones. They just don't get it. They think it will "go away" and take the meds and dr advice and all will be bettter. Boy, that sure is a bunch of hoo haw...

My SO got sick from a really bad respiratory illness and then I came down with it. I was chugging Tylenol Cold and Flu, Excedrin Migraine and anything else that I thought would make me feel better. Not long after this, I started to recover but then I was tired all the time and had constant D. I thought it was just leftover virus. When my SO got better and I got worse, I wasn't sure what to do. After about 2 1/2 months of constant D to the point where I was afraid I'd have a problem at work, I finally got hold of a GI Doc. Specialists in Gastroenterology.... yeah, ok....

She asked me questions and reviewed my med history. I told her that I was in agony, going between 8-20 times a day. To the point where I could not sit in my hairdresser's chair for a full cut or in my dentist chair for 45 minutes without having to go at least twice. I told her I'd wake up in the morning crying and feeling totally in despair. Its so not like me....I'm a go getter. I'm a hard worker and have been successful in most of my endeavors. For this to come out of the blue is mind boggling. It was a depression that blanketed me and I could not get rid of it. Crying at my desk is not my way!!!

She ordered up a colonoscopy (I'm 47). We did it and she came back with MC diagnosis. My bloodwork showed no Celiac's disease (even though I ranked a 3 and I felt it should have been a 0). I was desperate at this point. I asked her... what should I do. I've never heard of this and should I change something in my life? She asked about stress and my stress is high. I did tell her that but for me, my stress has always been at a high level. I asked about food... should I change my diet? She tapped her finger on the table and said, "No, you can eat anything you want. Food has nothing to do with this." Then she sat looking puzzled for a brief moment and said, "Wow, the only factor you have for this disease is that you are a woman". Never mind I'm still on the pill at my age and I listed it. Never mind that food should have been looked at first. Never mind the score that is low (negative for Celiac's) bt still scored above 0.
So she gave me Entocort. 9mg in Am and that's it. She told me she would not leave me on it long since there are unknown side effects. So I'm going to have a total of 8-10 weeks on this med before she yanks me off. I'm down to one a day now and supposed to go down to 1 every other day this Sunday.

Then I proceeded to come down with Strep throat. yippee....went to my normal doc who didn't know I had done all this without her. Told her what I was diagnosed with and here is what I was told "Gee, that's a bummer rap." It was at that point that I felt I better kick it into high gear and put my research hat on (trained well in research!!!) Glad I did. My next move is to ditch this useless dr. and find a new one. ALready got that moving!!! Cause when I got home I researched and found that she was accurate but who wants to hear that from your own DR?!?!?! What happened to compassino and understanding?

That's when I found this site.

I have drudged through so much information that I'm now processing it. I've been GF for about three weeks but then leanred that my vitamins are processed ina aplant that procfesses wheat amongst other things. Got rid of them a few days ago. Aveeno shampoo.l... just learned it had gluten in it. My toaster... been using it even though real bread has crossed its path. Need to buy a new one.

Bottom line: I've lost time not going GF/DF for my body to heal.

I'm diligent and determined to feel better. I'm seeing a Chinese Acupuncturist who is well known in my area for her skills. She has me on herbs and treatments just started this week.

I've just this week sent off my poo to EnteroLabs (taking the advice of those who went before me) and did the genetic testing, Panel A and the fat malabsorption test. Still have at least three more weeks to wait for that.

Next, I just yesterday placed an order with alldaychemist for 150 Entocort tabs. Cause I know my doc will be hard pressed to prescribe them. She told me when I last saw her, "Good luck, we wont' know anything till you are off the pills in late June. Just take Immodium and we'll see you in August. If you are still having bad D at that time we'll just do another colonoscopy." Uh, yeah, uh not so fast.

I feel betrayed. How can someone so intelligent, so well trained, so in demand and so in charge of people's well being NOT think that food has something to do with this condition. Maybe mine was triggered from NSAID's, the pill and stress. Maybe. But what about diet? What about genetic predisposition? I'm a Western European descendant.... Italian, Irish and Swedish. Makes sense, huh? Funny that ever lay person I've talked with about this and said this about food that they look at me like I'm crazy. They say, of course food has to have a part in this.

It must. No matter what happens I'm going GF and will stay that way even if I find I'm not Gluten intolerant (I will be) and even DF. I've discovered Almond milk, almond yogurt and almond ice cream and they make me happy. The only dairy I would miss would be cheese (sigh). I won't go back to dairy know ing what I know now either.

Well, I've ranted and ranted. I have been reading and learning and am a convert. Definite convert. Now if I could only wrap my arms around this disease and control it I will be alright. One last thing, my sisters and my mother all are coming around and "getting it" now as I've been diligent in teaching them and they are already aware of guten and dairy dangers. That's a big boost for me!

So glad to meet all on the boards. My new friends!!!

[MBombardier]

YA-HOO!! You are doing great!! I wish I had grabbed hold of my journey to wellness and started it as strong and as diligently as you are! Good for you!!

Welcome to our internet family! So true, we are all friends here, bonded by this horrible illness and (often) betrayal by the doctors that we trusted to help us. Ranting, crying, whatever it takes is perfectly fine. We have all been there, and/or are still there and we have big shoulders.

[Leah]

Welcome! I know what you mean about "wasting time" when you kept eating everything. It sounds like you have read a lot on this site. It's great, isn't it? Have you started to feel better yet? The Gluten thing takes a while to work. After three months and feeling better, i realized that soy was getting me. As time goes on and you heal, you will have a much better idea of what makes you react. I will also never go back to gluten or dairy, but I have started adding back in some fruit and salad... even some beans :)

You are doing great. Keep us posted on your progress

Leah

[tex]

My bloodwork showed no Celiac's disease (even though I ranked a 3 and I felt it should have been a 0).

The celiac blood test has such poor sensitivity that it will only detect advanced celiac disease. You would have to already have major damage to the villi of your small intestine, before the test will turn positive, and that typically takes at least several years (that's why the average length of time to receive a diagnosis of celiac disease in this country after the first doctor visit, is still over 9 years.)

She told me she would not leave me on it long since there are unknown side effects.

Unknown to her, perhaps, but the truth is, it's probably the safest drug available to treat this disease, and there are no major long-term treatment issues that have surfaced after over a decade of use (as long as common sense is used when taking the drug).

If you are still having bad D at that time we'll just do another colonoscopy."

That's a sure sign that she knows virtually nothing about treating MC, and she's hoping to use you as as a guinea pig. If you take her up on that, neither you nor she will learn anything new from the procedure, but you (or your insurance company) will take a big hit on the bank account, and you will have subjected yourself to an invasive, risky procedure for no good reason.

Naive GI docs who know little about this disease are always wondering what they missed in the exam, when they are unable to successfully treat the disease. The truth is that they will never find what they missed by peering into the patient's colon -- to find what they missed they need to look no farther than their own curriculum vitae -- they missed seeking out and absorbing the knowledge that they need in order to understand and treat the disease.

Welcome aboard. You appear to be on a fast-track to get your life back. Please feel free to ask anything.

Tex

[kitty16]

Welcome,


I to am relatively new and so appreciate this family, they will help all they can with information or just a hand pat.

K

[Zizzle]

Welcome InTents, and good work!!!! It took me a year to find this Board after I was diagnosed, but somehow I managed to find Enterolab first and order my testing. Boy was it an eye opener. You'll learn that most people here have trouble with soy - some like me can do small amounts in soy oil and soy lecithin, even fermented GF soy sauce, others can have none at all (which is very difficult, since everything these days has soy in it!!). You would be well-served to at least avoid tofu, edamame, soymilk, and other obvious sources until you get your Enterolab results back.

You'll soon learn that treating MC is a lifelong journey with plenty of ups and downs. Just when you think you've reached remission, another mini-flare can be right around the corner. But if you adjust your diet, you'll have your life back.

[humbird753]

Welcome InTent!

Your story is very motivating in that you have quickly taken charge and are taking all the right steps in your journey to "get your life back."

I was diagnosed with LC in June of 2010, but didn't find this site until November, 2011. I thought the doctors knew what they were doing, and mine also told me I could eat anything (right!).

I hope you are finding improvement since going GF and DF.



Paula

[Denise]

Welcome,

If I did not find this forum I woul not be where I am at. It takes time to realize that the diet it is the way to go!

[Christine.]

I am so impressed that you are not in denial over the diet link to wellness. I rationalized and agonized before I finally went g/f, followed a month or 2 later by d/f, s/f and finally egg free. Enterolab results will give you the plan and you sound very strong so you're sure you will do well. I fired my GI doctor a few months ago and do not yet need to replace him. Diet alone, without Entocort has helped me tremendously.
Welcome.
Chris

[maestraz]

Hi! I'm glad you found this group. I, too felt fortunate to come across it fairly quickly after my LC diagnosis, and have no doubt I improved more quickly as a result. Your description of MC " rocking your world" is SO accurate.

Just want to ask for the brand names of almond yogurt and ice cream that you have found. I bought an almond yogurt called Amande, and it's OK, but I'm not wild about it.

See? Right after your first post you have information to offer others. ;)

[Martha]

Welcome to the group, InTents. This is place to be to get information, sympathy, empathy, and encouragement.

[InTents]

Hi-

Yes, Amande is the yogurt I'm using right now. Its not the best but it does beat no yogurt and if I put blueberries into the yogurt its palatable.

Thanks everyone for the tip on soy. I'm watching for soy on labels. Question: Is there another word or set of words used to describe soy that would be on the labeling that we should look for? Or would it simply use the term soy and look for that alone? I've been concerned with gluten and then dairy and now I'm seeing that soy is a problem. I eat hummus that has soy... should I switch to a brand that does not have soy? Even if both brands say GF? So confusing.

I've only been GF officially for about a week (would be longer if not for the hidden gluten in my vitamins and the gluten in my shampoo) and dairy free for a week as well. I do feel better but no normans, only seem to have a slight problem in AM with 2-4 times and then I'm done for the day generally. Funny enough, I do seem to have a lot more energy but when I wera out I do wera out.

Ok, here is a question that seems a bit paranoid on the surface but its a good question... what happens when I use my regular toaster that's had real bread in it and now I'm using gf bread. Is that a problem? What about coming into contact with flours that contain gluten...not by eating but through touch or say I'm cleaning a kitchen that had flour on the counters. What happens if I come into contact with it? Just how sensitive are we anyway???

[draperygoddess]

First of all, welcome to the forum!

Each of us varies in sensitivity to gluten, but the best bet is to be as careful as you can about cross-contamination. I live with four non-GF people, so there is a lot of gluten in my house, but I'm very, very careful. After I clean up flour, I wash my hands with soap and water. I usually use a little cookie sheet in the toaster. I use separate pans and utensils. I label my own jars of condiments so that no one else sticks a crummy knife in them. My family knows to take a pat of butter off the butter plate and put it on their plate, then spread it with their own knife so we don't get gluten in the butter. It's difficult to avoid it 100% if you're not living alone or with other GF people, but my philosophy is to control what I can, and it seems to work pretty well.

[tex]

Here's a list of products/derivatives that may contain soy:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=736

Here's a list of products/derivatives that may contain dairy:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=735

Here's a list of products/derivatives that may contain gluten:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=733

As Cynthia pointed out, most of us are sensitive to even trace amounts of these foods or ingredients. If your kitchen contains wheat flour, you have to remain constantly vigilant, because the odds of cross-contamination are stacked against you. Flour dust goes everywhere.

Tex

[Leah]

Hi intents. Can I make a suggestion... that you may not like? I remember when I was going a few times in the morning ( but no normans). There is still plenty of healing that needs to go on at that point. Anyway, it struck me when you said that blueberries make your almond yogurt palettable. Many of us who are still in the inflammatory state can/do not eat fresh fruit. I gave it up for four months before I started testing each one individually. The skins are especially tough on our systems. So far I have found that mango is good. As is peeled pears and pluots with no skin. I can eat A FEW strawberries, but not too many. I also found that watermelon WAS NOT GOOD! Same goes for salad greens. I know it's a bummer, but once you are more healed, you will probably get many of them back.
Just a suggestion.

Leah