Celiac Disease Support Group

Celiac disease is an auto-immune disorder of the digestive system that occurs in genetically-predisposed individuals. It is characterised by damage or flattening to all or part of the villi lining the small intestine, which interferes with the absorption of nutrients. This damage is caused by eating anything with gluten (gliadin), a protein found in wheat, rye, and barley...

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mellywil 04/11/2012

I went to docs for over 13 years before a dx of Celiac desease. We went gluten free ASAP, be the x a dx was found she was falling down steps at school due to her ankles & knees just suddenly giving out on her, the docs put her on Home bound,that's where the school district comes to your home to continue school. She only had 3 weeks left but the ambulance was there rushing her to the H, she would faint & not come back around, temps @92f,half the x the teacher showed up! She had to redo all of her 2nd SEM of 9th. We were at LeBonhuer for days, her weight at 101lbs, she's tall 5'8 w/o scoliosis she'd be 5'10 & modeling!! Ha easy to stay thin w/Celiac. The H sent us home saying get counseling because her health is hour to hour! Well I know no mom that would settle for that!! I found a doc & begged cried anything it took for him to see her, bless him he did see her a day later! W/in 15 minutes he dx her w/ MPBP, Myco Plasma Bacterial Pnuemonae, basically she had bacterial Pnuemonae that went undiagnosed, her immune system weak could not fight it off on its own, thankfully she did not die from it, it now harbors in the red blood cells. He treated the MPBP for a year then her bod could not take the treatments anymore. We need to get weight on her soon so better help can be administered but her certain types of yeast levels r too high in her gut so I need a protein shake w/ no ingredients that can cause yeast growth which is mostly what all GF foods use as wheat substitutes. ANY knowledge will be greatly appreciated & used! We are watching her waste away before us, it is a living nightmare, but God is good & I am a survivor as she is too- So if any suggestions, bring it on! Thx, MeLisa

nanny1611 04/11/2012

Hi, mellywil, and welcome to this group. I am so sorry for the health issues that your daughter is dealing with, but glad she has a mom who is so concerned about her. I don't know what ingredients can cause yeast growth, except for sugar. And I'm not a doctor, so can't give you the answers you need. But here are some questions that you might want to research and/or ask your doctor about.
--Would acidolpholus help combat the yeast overgrowth?
--Is there a prescription medication that could counteract the yeast?
--Would a vegan or vegetarian diet help? (watch 1st video below) Or another diet such as Atkins?
--Might she benefit from a grain-free diet? (watch 2nd video below)
--Could she have a parasite wreaking havoc on her?
--Could she have a heavy metal problem? (Someone I know had this problem and underwent chelation therapy with good results.)

Videos (both by doctors):
http://www.youtube.com/watch?v=KLjgBLwH3Wc
http://www.youtube.com/watch?v=cv5RwxYW8yA

I was tested for mycoplasmas, but was diagnosed with chronic Epstein Barr Virus. At the time my doctor mentioned that Olive Leaf Extract was good for either one. She also suggested a supplement called Lauricidin, which is purported to be good for both. These supplements help to keep me healthy, probably because they are immune boosters as well as anti-bacterial and anti-viral.

Here are a couple articles that you might want to read.
http://ezinearticles.com/?The-Natural-Treatments-For-Yeast-Overgrowth&id=1989922
http://altmedicine.about.com/cs/conditionsatod/a/Candida.htm

Best wishes to you in your quest to find answers for your daughter. I will pray that the Lord shows you what will help her.

deleted_user 04/15/2012

I would consider a paleo diet, it's dairy, grain and allergen free--it's mainly protein, veggies, nuts and berries--there are so many recipes that can be altered to meet her needs. She needs Realy Protein, and protein Shakes are mainly made up of Whey--which is dairy and can cause bacteria and yeast. Also the Leaky Gut Diet may be of help to you. She's been very ill, so going slow at integrating foods back into her body is best. Either way I would go totally Grain Free, Dairy Free and even some fruits and veggies free. If you need website info on those I mentioned above let me know I will get you them, as well as I can email you some recipe books I have that are PDF's.

mellywil 04/16/2012

Thx for taking time to help! We are on super probiotics which provides acidophilus. We have been on 2 antibiotics that combat intestinal tract infections & parasites. We have been on the Specific Carbohydrate Diet for a year+ which restricts complex carbs, eliminates refined sugar,all grains, starches from diet. With her having Celiac Desease & the Myco Plasma Bacterial Pnuemonae lab titers up again, it is very tricky to balance the restrictive diet w/ CD & the need to avoid further yeast overgrowth due to the prolonged antibiotics to treat her previous Myco infection after the H stay; the main cause of her Candida Albicans (yeast that can become fungus cells also), but it was better than losing her! We don't feel her body could handle the chelation therapy yet. I am going to find powdered eggs/ some nuts, might even hv to make my own yogurt for the obvious benefits for her protein & nutrition shakes. Hope & pray the lil' ilium fingers in her small intestines have healed enough to catch the nutrients & proceed its process:) I will watch the links u posted, knowledge is power, right! I hope your EBV does well w/ your docs plan, I have it also along w/ the Myco myself & hv used the olive leaf extract but will ck on the lauricidin. Thx so much for the help, I will ck w/ doc on the heavy metal for sure. MeLisa

mellywil 04/16/2012

Sowie, yep we are on a diet pretty much up the paleo diet. She does hv Leaky Gut Syndrome, hv lots of websites on those particular diets but if u hv a favorite feel free to send & recipes w/ her restrictions are always welcomed. I'll friend you & I think that will provide my e-mail. zI think, new here though. MeLisa

deleted_user 04/16/2012

Without really knowing what she can and can't have, this is a smoothie-type drink I make sometimes that I really enjoy...maybe you can make it work for her somehow making the ingredients right for her needs:

1/4 c. blueberries (fresh or frozen)
1/2 (or whole) banana
2 tbsp peanut butter
handful of spinach
1 c. vanilla rice drink

mellywil 04/17/2012

Thx sixgoodyears, I'll just change the vanilla rice to vanilla almond:)

deleted_user 04/18/2012

Can she have Coconut milk?

deleted_user 04/18/2012

Wow how on earth did you get a diagnosis for LGS? That's almost unheard of in my parts of the country. Doctors think I'm nuts when I mention things like that.

Good for you--sounds like you are on a good path--I'm just not sure what types of food she can have not have.

mellywil 04/19/2012

Sowle, hey, sorry for delay, I'm not feeling to good, I have Active EBV,Myco plasma bacterial Pnuemonae & hypothyroid, & now looks pretty positive for MG(Myasthenia Gravis) . I'll tell ya a bit on how we got the leaky gut syndrome dx, her pediatrician in Tx + our doc here in TN , they ordered test for us where we collected , blood, stool, saliva & paid ourselves for the diagnostic test(ins might hv pd for a very minute amount, not sure)- I do hv the companies ordered from & type of labs ordered & test results but will hv to get into files to let u know specifics. yes most docs will look at u like u hv 4 heads or blow it off as a ludicrous scam! I can tell you first hand w/2 children & myself w/ dx'd leaky gut syndrome, it is for real, no scam !!!

deleted_user 04/22/2012

I think it's great that you were able to get the testings for LGS--Now it's going to be a road to recovery, and getting that stomach healed. Have you seen Karen Brimeyers e-books on LGS diet? She has some good recipes--send me a private email if you would like me to share a copy with you. I have no problem doing that.

I hope you get better soon you must be feeling absolutely miserable.

Blessings to you and your family
Penny

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