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Help! I Screwed Up My Life.
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4 posts in this topic

Sorry for the dramatic title but I really feel like I screwed up. The irritability, laziness, depression, anxiety and ofcourse pain that this disease causes (stealth like) is indescribable. Marriage, business, friends...I've almost lost everything.

I thought my problem was candida and that did help, but I cheated on the candida diet with one type of food group---certain grains, cereal, and yeast free bread. Little did I know that I was injecting the gluten poison in my body as I tried so hard to live up to the other restriction of a candida free diet.

Well atleast I know now. I have a couple of questions right now and I am sure more to come. Is Psyllium whole husk allowed?

Is brown rice okay or should I switch back to white rice?

I really enjoy millet, can I keep eating it ?(I cook it in a skillet before boiling)

I checked my suppliments (multi, enzyme, fish oil) and they are gluten free. Is there any supplements you recommend to heal the sm intestines?

Thank all of you so much.

Joe

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Wow! That was a dramatic title, but it got my attention so hey, it worked! The strain celiac disease can put on you and your family can be so overwhelming, even before you are diagnosed. I don't know your situation, but I do know that many of us have had to overcome huge relationship struggles because of the celiac disease. Believe me, you are not alone. Feel free to vent when you need to and ask as many questions as you want.

To answer a couple of the ones you posted:

Brown and white rice are both safe for celiacs as long as you are buying pure rice. None of those rice mixes like Zatarains or Side Dish packets are allowed.

Some online research I have done has said that taking glutamine-L as a supplement can help restore intestinal damage. Despite sounding like the word gluten, I checked a bottle at the health store and it is gluten free. Please talk to your gastro doc. before starting this because, as many have said, I'm not a doctor but I play one online! :D

Good luck getting answers to the rest of your questions!

Amy

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I also have candida of the small intestine and I am on Nystatin for it.

Brown rice and white rice are fine for celiacs. Millet and Psyllium are ok as well.

Probiotics are very important and would highly recommend them if you are not on them. Probiotic bacteria favorably alter the intestinal microflora balance, inhibit the growth of harmful bacteria, promote good digestion, boost immune function, and increase resistance to infection.

I take enzymes,probiotics,multi vitamin(liquid), b complex, sublingual b12, cod liver oil, etc.

The most important thing is to build your body up and give it the proper nutrients and it will heal itself. I can't tell you that something will work because every body is different and something that may have worked for me might not work for everyone. By taking these supplements that really helped me get back to where I need to be.

http://celiac.com/st_prod.html?p_prodid=18...-46105116547.f8

This link is to this sites safe list for celiacs that may help you out a bit

http://celiac.com/st_prod.html?p_prodid=18...-44105178947.c6

This link is to this sites forbidden list for celiacs which is also a good guideline that would be useful

Good luck with everything and hang in there. :D

It gets easier

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We've all been there. The medical establishment in my experience is basically clueless about this disease but the members of this group are not. This disease really messed up my life too. I could go on and on about how it wasted the first 36 years of my life but that would be pointless. I have been gluten-free for a year and it has been a great year. It takes time but it is worth it. Yes you do have to make some sacrifices but consider the alternative.

Ianm

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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