Multiple Questions due to Multiple Frustration!!!!

[Coach Polly]

I have several questions that don't relate to each other so I'm going to ask them all in one post and pray that people will read this and have some insight!

1. I found out yesterday that my gene test was positive. What does that really mean? My biopsy was negative for celiac but I have several family members with celiac disease.

2. Does anyone know about any supplements that are "everything free"? I would give anything if I could just drink a shake that would fill my nutritional needs without upsetting the apple cart. I used to work at a gym and would drink protein shakes that had everything I needed. I am soooooooo weak and I know it's because instead of possibly eating something wrong I just don't eat at all. I was doing fine when I could eat eggs because they were quick, easy, and even portable, but when I got my allergy testing back it ruled out almost EVERYTHING.

3. I ran out of bananas for a couple of days and noticed that my stomach was a little calmer as far as gas. Does that mean that the bananas are damaging to me or can I still eat them if I'm willing to put up with the rumblings? (I'm not allergic/sensitive to them.)

4. At what point do I ask for a different medicine? I've been on Entocort for 4 months and still have D. Since I have changed my diet I don't have the frequency or urgency but Norman hasn't appeared yet.

I apologize for all the questions but I'm having a really bad weekend. At the ballpark from 8:00-4:00 with my kids and I thought I would starve (really poor planning on my part but I'm just so dang tired!!) My brain stays so full of everything each of them has to have that I just push all my crap to the bottom of the totem pole. This time of year I am on the go constantly--I'm barely at home long enough to wash their uniforms and get my school papers graded during the week so cooking is an absolute impossibility. I'm going to try the idea of cooking alot of meat on Sunday and see if it helps. I NEED PORTABILITY!!!!

All opinions/answers are more than welcome!!!!

[Joefnh]

Hi coach Polly, the genetic test just means that you have the possibility of developing celiac disease, from the sounds of it your test show that you not as of now. It also means that a GF diet is a very good idea

I know there has been several threads about this and I'm sure other will weigh in about the nutritional supplements.

You know if your stomach is a bit calmer without bananas I would reduce how many you are eating. They may be causing some of the D you are experiencing, intolerances are tough to nail down at times. Trying them one at a time is a good way to help figure them out.

As you have been on entocort for 4 months and are still having d, it could take a bit longer, for some it can take 6-8 months. What dosage are you taking? Another good possibility is that there is another food that you are eating that may be causing you issues and is not allowing the entocort to stop the d. The possibility of the bananas come to mind as you mentioned some symptoms with them

The portability is the issue, for snacks I also have rice cakes and nut butters available as a high protein snack. If you can tolerate chicken bring some in a container with some well cooked veggie like carrots. These can be finger foods of prepared correctly.

I tend to cook all my meals and snacks on the weekends and either refrigerate portions for meals or snacks and freeze any extras, that way I can be on the go with safe filling food whenever needed.

Hang in there this does get easier as you figure out your routine. Planning and preparing ahead of time is a key adjustment

Joe

[tex]

I found out yesterday that my gene test was positive.

Positive for what? One or more of the celiac genes, or genes that predispose to microscopic colitis? Many of us have at least one celiac gene, (including myself), and some of us have two copies of celiac genes, but we test negative for celiac disease, using the "classic" diagnostic criteria. Of course, for those of us who don't have celiac genes, we all have genes that predispose to microscopic colitis, but then, so do most people in the general population. If I recall correctly, at least 35% of the general population has one or more celiac genes, FWIW.

Since your kids received half their genes from you, if you have one celiac gene, then half your kids will have a celiac gene, (of course, if your husband has one or more celiac genes, then their odds go way up). If you have 2 celiac genes, then all your kids have inherited a celiac gene from you.

2. Does anyone know about any supplements that are "everything free"?

That would be Freeda vitamins: http://www.freedavitamins.com/

3. I ran out of bananas for a couple of days and noticed that my stomach was a little calmer as far as gas.

Bananas are high in fiber, and because of that, about 85% of them pass into the colon, where they are "digested" by fermentation, (resulting in gas). You may have to limit the amount, since fiber issues are usually a dosage problem.

4. At what point do I ask for a different medicine? I've been on Entocort for 4 months and still have D. Since I have changed my diet I don't have the frequency or urgency but Norman hasn't appeared yet.

Entocort is the most effective "safe" medication commonly available for treating this disease. For some of us, drugs alone are not sufficient - we have to eliminate virtually all food sensitivities from our diet, even with the drug treatment. If you have reduced urgency and/or frequency, then the Entocort is definitely helping. You probably just need to fine-tune your diet some more.

Tex

[Gloria]

Coach Polly,

I hear your frustration. This disease can turn our lives upside down. I feel for you having to teach, take care of a family, and deal with MC. You are entitled to feel exasperated.

I can't add much to what Joe and Tex have written - I agree with all of their suggestions.

I also found that after eating a banana, I would feel pressure all day and eventually need to go again by evening. I stopped eating them completely and the pressure went away. After avoiding them for about 1 1/2 years, I've begun eating a half of a banana with cereal, and I no longer have the pressure. My gut has been healing the past year since I greatly simplified my diet.

My snacks are pudding, muffins and smooth nut butter (Barney's Almond butter) on rice crackers or rice cakes. They are all easy on my gut and also filling.

My sympathies are with you. The school year is coming to a close, though as a coach you are probably busy during the summer. Hopefully you'll be able to devote a little more time to taking care of your own needs.

Gloria

[Mags]

Coach Polly--

I use a shake mix that is GF, DF, SF, and vegan, but is a complete protein. I might have given you the name before--remember when we were talking about protein cycling?

It comes in three flavors, but I only use the vanilla. It's called Vegan Proteins Plus, and I order it online at http://www.genuinehealth.com . They also have a store finder on the website. You can mix it with water, or whatever milk substitute floats your boat. I am lucky enough not to react to casein, so I use lactose-free milk. You can shake or stir it, but I recommend a blender. There have been times when I have lived on this alone. The texture is not perfect, but hey, it works for me!

Hope this helps!

Mags

[Coach Polly]

Thanks everybody!

Tex, the test was for the celiac gene and I haven't seen the results myself yet. The nurse just called and said I was positive so I'm not sure exactly what was tested. I do know the lab was Prometheus(sp?).

I'm going to cut back to 1 banana a day maybe 1/2 at a time.

Again, thank you everyone for lending me your "veteran" advice.