Newly DX - much needed advice

Barb1 · Post by **Barb1** » Sat Sep 24, 2011 5:47 pm

Hi, I am new here, I was just dx with " mild LC", I have had D for about 6 months. and no real other symptoms. I am not as bad some, mostly 1-3 times a day. Dr. wants me to start Asacol, but after doing some reading here I am not so sure if it is the right med, he didn't suggest PB, just Imodim AD and metimucil. After my first dr visit all conversations were over the phone, even after my biopsy, kind of hard to have much of a discussion over the telephone (disappointing). What about Entocort, someone said that is pretty safe and effective, I haven't looked that one up yet. And how do you tell your dr you want to try a different med?

I am going to try gluten free to see if that helps, I know I can't eat fresh fruit, so that's out. I don't eat much dairy except butter and a little cheese in food, and I drink silk almond milk. This is so frustrating, I've lost 5 lbs in the past couple of weeks because I don't know what to eat, so I sometimes just skip.

I've already got MS, Hashimotothyroiditis, Raynauds and now LC which are all autoimmune.

I had blood work done for all kinds of food/spice allergy and just waiting for my dr appointment (different dr than my gastro). I'd appreciate any help on where to start.

Thanks,
Barb

MBombardier · Post by **MBombardier** » Sat Sep 24, 2011 6:57 pm

Barb! You have come to the right place to learn about MC. There are a bunch of us with Hashi's, too, so you will see information about that as well.

One thing I would suggest is that you consider whether you want to take the Metamucil or not. Many of us have trouble if there is too much fiber in our diets, especially while we are still healing.

It's a very good idea to go gluten-free! It can take several months for going gluten-free to have an impact on our symptoms, so I encourage you to give it time.

Welcome again!

JLH · Post by **JLH** » Sat Sep 24, 2011 9:55 pm

Barb

Yes, try going gluten free. It may really help you.

http://ezinearticles.com/?Gluten-Free-D ... &id=450571

Post by **tex** » Sat Sep 24, 2011 10:00 pm

Hi Barb,

Welcome to the board. With that many autoimmune issues, the odds are very, very high that you are sensitive to gluten, and probably to casein, (the primary protein in all dairy products). Eliminating the foods to which we are sensitive, usually helps to improve the symptoms for all of our autoimmune issues, not just the colitis. If you are sensitive to dairy, then Asacol probably will not work for you, because it contains lactose, (and probably casein, as a contaminant in the lactose). Many of us cannot take Asacol for that reason. In addition to that, the active ingredient in Asacol is mesalamine, which is chemically related to salicylic acid, and derivatives of salicylic acid, (such as NSAIDs), cause MC for many of us. For those individuals, all of the mesalamine-based medications will make their symptoms worse, (not better). For those who are not sensitive to NSAIDs, some of the other mesalamine-based meds may work. Asacol is the only one that contains lactose, so it is the worst choice of that group of meds. A much better choice would be Lialda, Apriso, Colazal, Pentasa, etc.

Yes, Entocort is more effective than most other meds for treating MC, but some GI docs are scared to prescribe it, because they consider it to carry the same risks as the other corticosteroids, (such as prednisone). In fact, Entocort is much, much safer than prednisone, but you will probably never be able to convince your GI doc of that - most GI docs are poorly acquainted with MC, unqualified to treat it, and many are not open to suggestions by their patients. Many are unwilling to prescribe Entocort for more than 8 weeks, for example, even though it has been proven to be safe for long-term use.

Silk Almond Milk is good stuff, by the way - I use it myself.

Anyway, to get to the bottom line, it's not impossible that Asacol might work for you, but it is the poorest choice of that family of medications, (the 5-ASA meds). If you want to treat your LC without any help from your GI doc, (which many of us do, either by necessity, or by choice), the diet will allow you to reach remission without a need for any meds, (provided that you figure out which foods you are sensitive to, and avoid them like the plague).

Most gastroentoerologists do not recognize that food-sensitivities are the cause of the inflammation that is associated with LC, (because that wasn't covered in medical school), and so they will argue until they are blue in the face, that diet has nothing to do with the disease. They are wrong, however, because diet has everything to do with LC.

It takes a while for the diet to work, but many of us here are in remission by diet alone, including myself.

The blood tests are worthless for food sensitivities. The only tests that will accurately and reliably determine food-sensitivities are the stool tests offered by Enterolab, in Dallas TX. The type of gluten-sensitivity that we have, for example, is never detected by the blood tests. That's because the antibodies are produced in the intestines, not in the blood. Even for celiac disease, the stool tests will detect gluten-sensitivity at least several years before the disease matures enough for the antibodies to begin showing up in the blood. By the time celiacs are diagnosed by the blood tests, they have suffered for years and years.

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

Tex

Barb1 · Post by **Barb1** » Sun Sep 25, 2011 6:40 am

Thanks, the info is helpful. Now I know I won't take Asacol, What about Pepto Bismul or Imdium AD? Would it hurt to try one of the other meds that Tex suggested or do you think my best route is GF? I am not real fond of taking drugs, to many side effects and mostly they just treat the symptom not the cause; but from what I have read here I can see some really need relief from there symptoms so medication is helpful. Having D can keep your social life to a minium.

What are some foods that are typically safe to start out with, white or brown rice, potatoes, eggs, chicken? My biggest problem is I don't think I get enough protein.

I have been reading a little on this site since my diagnosis and I believe in what I read and what you have to say (you are here to help), but my husband is VERY skeptical, he is not a computer/cell phone guy. In particular he questions the blood test vs stool test for allergys, just because a DR's don't suggest it and it is on the internet. I can't get it through his head the the medical profession doesn't know everything. He makes me feel like I shouldn't believe what I read on the internet. I believe more from what I read from people here because it is real experiences and he doesn't get it. He is frustrated with me and I with him. He is trying to be supportive, really, but he doesn't understand like I do :( He questions why I wouldn't take the Asacol my Dr. prescribed. I would do the stools immediately but...he thinks if it is off the internet its not the right protocol. It makes me depressed dealing with the LC and him :(

If I did take the Asacol for awhile(to appease him) what do you think the percussions might be?

I'm sorry I guess I needed to unload with someone that understands.

Thanks for listening.

Barb

JLH · Post by **JLH** » Sun Sep 25, 2011 7:52 am

Barb, I was backwards of most Potty People. I found the web site after I found EnteroLab. As soon as I got to this site to check out EL, I became a believer.

I got my diagnosis on a Friday and by Monday I was GF. I went the diet only route, no Lialda or Entocort that my GI wanted to prescribe.

Listen to the people who have been going through this with great success, not your DH or doctor. I'm so glad I did.

JLH · Post by **JLH** » Sun Sep 25, 2011 7:54 am

Some of the people in the Celiac community do endorse EnteroLab, too.

I found this in a Celiac forum and the last two made me laugh.

"There is sound science behind it as far as I can determine but I don't know why he hasn't published his paper or research. I have read two other books that refer to fecal antibody testing, including Dr. Green's book.

Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :( "

sarkin · Post by **sarkin** » Sun Sep 25, 2011 8:31 am

Barb,

No drug will work unless you also remove problem foods from your diet - so you may as well give GF a try (and I would recommend dropping dairy at the same time - for me it was much easier than doing it in stages).

I also had trouble getting enough protein - my vegetarian days are definitely over now. I ate a lot of homemade chicken soup, at first, and came to rely on eggs (which I later learned aren't right for me, but if they work for you they sure are nutritious). I now eat more red meat than I used to, and turkey burgers... you'll find a lot of the foods you used to eat are "gluten free" naturally (like eggs and meat and fruit and veg - but do keep the fruit/veg very simple in the beginning, peeled and well cooked, at least till your symptoms settle down). I am trying to keep my protein intake up, still. (This morning breakfast is chicken sausage, with sweet potatoes.)

Don't worry about convincing your husband - just fight your symptoms, and then you won't have to fight to convince him (or if you do, at least you'll have more strength!).

My husband also asked "how do you know this Enterolab is the real deal?" (I don't remember what I answered - but how do we know anything is the real deal?? Look at all these pharmaceutical drugs that get pulled off the market after people have terrible health events.)

I used Pepto Bismol, and it really helped me, but does not agree with everyone. Many here include Imodium in their 'toolkit' - either while healing, or 'just in case' of eating something inadvertently.

Keep us posted, and feel better soon,

Sara

Barb1 · Post by **Barb1** » Sun Sep 25, 2011 9:13 am

Thank you so much, it feels good to have someone to talk to that understands. And as far as my husband, I may quit talking about my health and anything related, it's to bad because we are very close (we even work together which makes it harder).

So no hard cheese if your going dairy free? It's in the FOPMAP diet, so are the following:
Sorbet?
Butter?

What are your sweet treats?

Thanks,
Barb

sarkin · Post by **sarkin** » Sun Sep 25, 2011 9:42 am

No dairy means no cheese and no butter... many of us use almond milk or coconut milk (check labels, and you can make your own nut milk very easily).

I believe that enjoying small, occasional sweets is normal, but having huge cravings is actually a sign of grain/carb addiction. (This is opinion here - not nec. fact.) There are brands of chocolate without dairy or soy (and very rich - a little goes a long way), and if you check sorbet labels for suspect ingredients you should be able to find some good options. So Delicious brand makes a coconut 'ice cream' in several flavors, too...

It's hard to sort out the conflicting diet lists, I know. If you have some understanding of the FODMAP diet, you will find it a relative breeze to work this out

There are some great recipes in the "Dee's Kitchen" section here on this forum. And you'll hear from better bakers and sweet appreciators than me, I'm sure! (My current vice is potato chips, lol.)

Sara

Gabes-Apg · Post by **Gabes-Apg** » Sun Sep 25, 2011 3:24 pm

Hi there Barb,

I figured out my main intolerances via elimination and keeping a food diary. it took me about 9 months to identify the main triggers and come up with an eating plan that suits me.

I think one of the key things that is important to achieving Management of MC is that we have to do a 180 degree turnabout of beliefs that we have held for 15- 25 years regarding foods.
Fibre is not our friend, and sometimes to much variety can be a trigger

I havent eaten any fruit in almost 2 years, i havent eaten any green vegetables in almost 2 years. But i am reasonably healthy I got through this winter (i am in australia) without any major flu or colds. Ironically colleagues that eat greens and fruit every day did get the flu.

once you figure out what meds work best for you, and you figure what foods work best then you wont have to prove anything to anyone, they will see the difference.

Sweet treats:
- there are chocolates that are GF/DF/SF.
- there are good quality cake and muffin mixes avialable
- thanks to the hints in the Dee's kitchen part of this forum, i have adjusted quite a few of my receipes for cakes, biscuits etc to work with my allowable foods
- making my own jello, with apple and blackcurrent juice with gelatin.

once you climb over the initial mountain of information, it does become easier!
take a few deep breaths and take it all a meal at a time.

take care

Barb1 · Post by **Barb1** » Mon Sep 26, 2011 4:30 pm

What about popcorn, it is my FAVORITE snack. Please say it is ok, I could give up most anything except popcorn! What if I keep fiber really low except for popcorn?

How many of you use Asacol? For how long? I keep thinking I should give it a chance?

Thanks,
Barb

sarkin · Post by **sarkin** » Mon Sep 26, 2011 4:35 pm

Barb,

I can tolerate corn, but popcorn would have been terrible for me at my sickest point. 6-7 months later, I'd approach with caution (try just a little, wait and see). Maybe you can take a little time off from popcorn, and gently re-introduce it in small quantities?

We do feel your pain - each of us has had some teary "break-ups" with especially favorite foods... some of us have had many (not me, so much - not yet, anyway).

Good luck,

Sara

Post by **tex** » Mon Sep 26, 2011 4:46 pm

Barb,

Popcorn used to be my favorite snack, also - I had to have it every day, usually at night. Unless you happen to be sensitive to zein, (the primary protein in corn), which is not a common food-sensitivity, the effect is dose-sensitive. IOW, the more you eat, the more likely you are to have problems, since popcorn is a good source of fiber, and fiber is contraindicated for MC.

Tex

MBombardier · Post by **MBombardier** » Mon Sep 26, 2011 10:20 pm

I can't do corn. It was my second-to-the-last holdout as far as the big four go--wheat, rice, corn, oats. I don't care much for popcorn unless it is drenched with a peanut butter, corn syrup and sugar mix. Rabbit trail: I used to wonder why I'd have a hangover-type headache after eating this, which was one of my favorite treats. I thought it was because I ate too much. Little did I know then that it was my badly-treated body trying to let me know something was wrong.

Anyway... I wondered how I could do without corn chips. How could I live without something to crunch, since I couldn't do potato chips? But as you will hear often, feeling well overcame the desire to eat corn chips. Especially after I stopped eating corn for a little bit and reintroduced it to see if it was a problem. Oh, it was.

As you can see by the info under my photo, I am now grain-free, including certified GF oats. That was a toughie, too. I never thought oats would be a problem, but I guess the heartburn after eating them the last several years was an indication that I couldn't eat them. I just wasn't clued in then.

I have tried baked goods made with other grains besides those four, and have reacted. Hopefully, you will not be as sensitive. But I know that Sara (and others) will agree with me that eating a paleo diet, if one has many grain/dairy/soy, etc. intolerances, can be thoroughly satisfying.