Another New Girl!

JeanIrene · Post by **JeanIrene** » Sat Feb 23, 2013 6:37 am

You're absolutely right Carol! Finding those substitutes make you feel so much better. When I gave up peanut butter, I went out and bought some cashews, put them in my food processor, and in five minutes had a better-tasting spread than my beloved peanut butter. And the muffins made with almond flour are better than any traditional ones.

As HockeyMom said, the worst part is going out socially. Trying to find something to eat is a real challenge and I get stressed thinking what they might do to my food even though I'm very specific about it.

As for the Culturelle, I tried it for a week and eliminated it, as I did all supplements other than D, B-12 and high quality fish and flax oil.

Thanks for the good wishes, Terri!

Jean

t girl · Post by **t girl** » Sat Feb 23, 2013 10:01 am

So funny that a couple of you said no hummus - I was all proud of myself for thinking of picking up hummus (which I usually wouldn't eat) and rice crackers the other day. After eating my snack I decided that wasn't a good idea! But of course, nothing settles so didn't know for sure if it was the hummus. Carol - love the idea of cauliflower hummus. I also make a smashed cauliflower which I love (but of course, now I will have to leave out the cream cheese and parmesan).

I am going to take the advice and just try and keep to some very basic GF/DF foods to start out and see if I can get things under control and then slowly introduce more foods (I will also stay away from soy for now just to see). I am also going to look into l-glutamine, D and B vitamins.

I see many of you stayed clear from raw veggies and fruit at first...would you include bananas in that category? (again, unfortunately so messed up at this point have no idea what's creating D and what is not).

You have all given me hope (and a plan) that I can get back to normal! Thank you, thank you!

tlras · Post by **tlras** » Sat Feb 23, 2013 11:34 am

@Carol...cauliflower hummus....sounds good. Luckily I do well with cauliflower.

@Tracey...most seem to tolerate bananas...I definitely do and eat one everyday for potassium. However, some do not tolerate them. You'll have to test that out. Some can tolerate 1/2 a banana but eating a whole one may cause issues. But usually, it's a considered a safe food for us. Let us know how it works for you. Some eat papayas, applesause or canned peaches but we are all different. I'm starting to add foods back in and thinking about trying an apple but totally nervous about it.

As for legumes, I have now added back in kidney beans but only after waiting around 6 months to do so. I simply need a little more fiber these days now that I'm healing. And so far so good. I have yet to brave a nut butter but considering trying Almond butter soon. No way will I do peanut butter again. Off my list forever. I do miss my cashews!

Again, good luck with all the diet changes. It's worth it!

Terri

tlras · Post by **tlras** » Sat Feb 23, 2013 11:44 am

@Tracey...also be careful with what vitamins you buy. Makes sure they are gluten, dairy and soy free. I had to change out my Vitamin D3 pills as they had soybean oil in them. Now I get ones derived from Lanolin. If you do a search for vitamins, there are quite a few posts about where to buy safe vitamins (those that don't contain ingredients we may react to ). I think Kirklands is one of them. Just scroll down the list of questions and you may find it that way. Some use a sub-lingual (sp?) b-12 and D3.

Terri

tlras · Post by **tlras** » Sat Feb 23, 2013 12:04 pm

Oops...I meant some eat mangos....don't know much about the papayas.

Terri

Zizzle · Post by **Zizzle** » Sat Feb 23, 2013 1:49 pm

Regarding legumes, I've learned something new because of my daughter's legume-wide IgE allergy. She was first allergic to tree pollen, including birch tree pollen. It turns out soy shares many similar proteins with birch pollen, as do other legumes including peanuts. Technically this type of cross-reactivity is referred to as Oral Allergy Syndrome, except she has no oral symptoms to date, only abdominal pain and D (which mimics my MC symptoms). So if you have hay fever from tree pollen, soy and other legumes have the potential to contribute to your food sensitivities and D.

Read about it here:

http://www.food-info.net/uk/intol/soy.htm

And

http://www.ncbi.nlm.nih.gov/pubmed/14713921

birdlover3 · Post by **birdlover3** » Wed Feb 27, 2013 8:31 am

t girl wrote:Thank you both! Have you often seen those that don't respond to Entocort? Do you think I should try the Pepto road next? Or try another med like Asacol, etc. I almost fee like I need to try something to aid in the healing while the diet (hopefully) does it's job.

I assume from your response that you really believe in the Enterolab results? Would you recommend the A&C panel? How specific will the results be (generic like gluten or specific as in potatoes, carrots, etc). I believe the MRT test would fall into the blood test you spoke of that won't really give the results I need?

At this point I feel better trusting all of you over my GI since you have lived through this - and from reading posts MD's don't seem to have a handle on the treatment.

Again, so appreciate the assistance - you are helping so many people!

Hi tgirl,

I was diagnosed fall of last year and started on Endocort (Budesonide) 5 weeks ago. It started working the very day I took the first 3 pills. I went from 8-10 runs to the bathroom down to 1 a day immediately, and the stool started forming. Within a week (after our Mexican vacation) My stool was 'perfect' and normally still 1 a day. I'm 5 1/2 weeks now into the Budesonide and will start my weaning process on Saturday. It doesn't appear to work for everyone, but I'm a believer! I was panicking how I was going to go to Mexico in the shape I was in, but this drug saved my vacation and continues to be wonderful!

About the Enterolab. You might check to see if your doctor could write a prescription for the Enterolab tests (if your insurance needs it). My family doctor (who is willing to help me in any way) said he would be willing to do whatever to help me get those tests. Have you called your insurance company? Enterolab will give you the CODES you need to call the insurance company to see if they will cover the tests. Mine said they would cover 50%. I just sent in my test Monday and am waiting for results. Meanwhile I'm trying to stay away from spicy foods, cabbage family veggies, chunky tomato stuff, hard veggies (I'm eating canned ones), no corn or peas, no fresh fruits except bananas (I am eating canned ones and they seem to be fine), no mushrooms, etc. Trying to at least make it easier for my gut to digest things while I wait for the test results.

HOpe this helps. You can PM me at any time. I don't know everything, but am still trying to learn and research. Have you purchased Tex's book? It's filled with all the information and then some about this disorder. The book plus the forum are invaluable.

Good luck on your journey. Try to keep positive ;) Barb

t girl · Post by **t girl** » Wed Feb 27, 2013 7:07 pm

Barb, thanks - any and all information is always so interesting and a learning experience! Strangely the Entocort never really did it for me - I wish it had, but then again if it had I wouldn't have found this site until after I weaned and was back in the same place.

I have been GF/DF and everything else free (of fun) for the last week...am still weaning off Entocort (down to 1 tab a day) - had major withdraw symptoms the other night (flu like). As soon as I cut down on the Entocort the WD returned quickly....so i started the Pepto regime to try and get me through until hopefully the diet heals my gut. Hoping it happens sooner than later!

Question: I asked my Internist (really his PA) to order an IgA deficiency lab test (before I sent in to Enterolab). She said if I already tested negative for celiacs then I wasn't IgA deficient. She said celiac patients are IgA deficient and if I'm not then I am not deficient. Not sure that sounds correct to me....I assume she knows more than me but after reading about many GI's I am now questioning everything!

Yes, I did get Tex's book and couldn't put it down!

tlras · Post by **tlras** » Wed Feb 27, 2013 7:32 pm

T-girl,

The statement your doctor made about IGA deficiency confuses me. I have Celiac disease and was diagnosed by bloodwork first which showed high IGA anti-gliaden (wheat) levels in my bloodstream along with Anti-tissue Transglutamise. That's when I had to go to the GI doctor to have the endoscopy done which just confirmed Celiac disease. After 4 months of GF diet, I still had IGG antibodies to wheat but IGA has gone down to normal.

Maybe Tex can elaborate more on this issue. Totally not getting it. I know I'm not IGA deficient.

Praying the Pepto works for you. It was Godsend for me!

Terri

t girl · Post by **t girl** » Wed Feb 27, 2013 8:37 pm

Thank you! It confused me as well - but it seems the more I know the more questions I have!?

The pepto so far is great! Hoping my gut heals enough by the time I am through so I don't go back to D.

tlras · Post by **tlras** » Wed Feb 27, 2013 9:27 pm

Don't remember if I told you but I did 7 pills of Pepto for 2 months when weaned myself off the 3rd month. Went down to 6 one week, then 5, etc. I started at 8 but that got me really constipated so stuck with 7. I do believe it helped me heal some. It was nice to be able to go out and not worry about where a bathroom was. I actually miss the bright pink pill...lol....it was my sweet snack!

Wishing you the best of luck!

Terri

t girl · Post by **t girl** » Wed Feb 27, 2013 9:33 pm

Thanks Terri - were you in pretty good shape after getting off pepto (with the D)? Assuming you were GF at the time...I should stop thinking ahead and just be happy things are under control now!

tlras · Post by **tlras** » Wed Feb 27, 2013 9:47 pm

I got off daily Pepto on December 10th and then took a few doses once a week as we had holiday gatherings and a wedding to deal with (just preventative). The last one I took was a little over a month ago and I had taken it for heartburn. Not even close to having D. Even get a little sluggish and have added a little fiber but that's after being GF and DF for about 7 months now. The combination of Pepto and diet has worked wonders. I can't wait to eat a salad again but will wait a little while longer for that. I still stick with my safe foods mostly which is chicken soup, most meat, lots of rice, bananas, some veggies, avocado and rice chex. I do well with some GF bread and GF pasta but need to cut down on those since I've gained some weight back. Most people don't recommend processed foods but they worked well for me during the healing.....not sure why. One of the lucky ones I guess.

Just take it one day at a time. Glad to hear things are under control and hope it stays that way. In the back of my mind, I worry about a flare but it's no longer at the forefront so I'm happy about that as stressing over it makes our symptoms even worse.

Keep us updated!

Terri

Leah · Post by **Leah** » Thu Feb 28, 2013 2:12 pm

T-girl. I don't know where the heck your doctor got her info from, but she's wrong. The test I took for IgA deficiency ( and IgG) was a different test then the one i took for celiac. I tested negative for celiac BECAUSE I am IgA deficient.

Leah

t girl · Post by **t girl** » Thu Feb 28, 2013 2:34 pm

Leah - thank you, I wondered...and you actually popped into my mind since you are the one I remember reading that Enterolab was futile for you since you were IgA deficient. Yikes!