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Healing After New Diagnosis


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9 replies to this topic

#1 jennifer47

 
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Posted 05 January 2011 - 05:33 PM

I've just received my "official" diagnosis today, though during my endoscopy 2.5 weeks ago the doctor saw clear signs of damage. So, I went gluten-free then, but am continuing to learn and get serious about healing. Funny thing is that although the biopsy showed total atrophy, the blood test was negative. But the doctor said the biopsy really is the gold standard.

So, what I'm wondering now is what I should do to heal? Obviously avoiding gluten is paramount, and I'm still figuring out exactly where its hiding. But what have others found useful in the healing process? Anything else I should avoid? Is there anything in particular I should have in my diet or any supplements that help? What is the most trusted info source for celaic and gluten info?

I'm also wondering how far I need to go in gluten avoidance? Do I need to avoid food processed on a gluten line? What about food made in the same factory? It seems to be getting so restricted when I consider those options. I can deal with gluten free, but how many foods are actually made in an entirely gluten free environment?!

Anyways, any help is great...what did you do and what was useful in your healing? Thanks!
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#2 rosetapper23

 
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Posted 05 January 2011 - 07:01 PM

In the beginning--and especially if there's a lot of healing to do--it's best to avoid processed foods. Natural foods are the way to go so that you can be sure that you aren't getting any contamination. The American way of life, unfortunately, has been based on processed food for such a long time, people sometimes have a difficult time adjusting to this change, but eventually you won't even miss processed foods. Many of us look at them now and practically gag--they just don't appeal to us. Also, to help heal, many celiac experts recommend L-Glutamine, which heals the gut.
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#3 quincy

 
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Posted 07 January 2011 - 07:44 AM

In the beginning--and especially if there's a lot of healing to do--it's best to avoid processed foods. Natural foods are the way to go so that you can be sure that you aren't getting any contamination. The American way of life, unfortunately, has been based on processed food for such a long time, people sometimes have a difficult time adjusting to this change, but eventually you won't even miss processed foods. Many of us look at them now and practically gag--they just don't appeal to us. Also, to help heal, many celiac experts recommend L-Glutamine, which heals the gut.

Welcome to the community Jen. I was dx'd in April and I just got my latest blood work showing my antibodies close to zero, and that is just in 8 months. I also had villous atrophy but not sure it was total as yours was.
There is a lot to learn, so do alot of googling and read the blogs posted here and the topics you will learn alot. This is the place where I got most of my education on gluten, and I really still consider myself a "sophomore" when it comes to this.

Happy Healing to you!

PS. You will need a good digestive enzyme, a good probiotic, and avoid all dairy. thats also my best advice..
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#4 okieinalaska

 
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Posted 07 January 2011 - 11:46 PM

Jennifer47, congrats on the official diagnosis!: ) I finally go for my first gastroenterologist visit next week and they will schedule my endo. I can't wait. : )

Quincy, So what is a good digestive enzyme and a good probiotic?
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Amy in Alaska
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#5 Luddie

 
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Posted 08 January 2011 - 08:03 PM

Jennifer47, congrats on the official diagnosis!: ) I finally go for my first gastroenterologist visit next week and they will schedule my endo. I can't wait. : )

Quincy, So what is a good digestive enzyme and a good probiotic?


I don't know if it qualifies as a digestive enzyme but I think it does as a probiotic, and that is Kefir. The brand I use, Lifeway, says it's 99% lactose free, so I'm thinking that's probably okay. I'm currently starting an elimination diet and dairy is off limits, but I think Kefir is okay. I guess now that I'm writing this I'd better double check with my doc. (Or if anyone out there knows the answer to that.) If you've never had it, it's like a liquidy yogurt, very lemony and a little fizzy. I use it when I take my vitamins/minerals to help them go down, but I also really like the taste. You may have to get used to is slowly.
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#6 mushroom

 
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Posted 08 January 2011 - 08:38 PM

Yes, by all means avoid all lactose (milk sugars found in milk, cream, ice cream) and to a lesser degree in other dairy products. This is because the enzyme that digests the lactose is made at the tips of the damaged villi, so are the first to be damaged. Test yourself with other dairy products - some can tolerate yogurt and hard cheeses, others cannot. I second the use of probiotics and digestive enzymes, the former to help heal the gut and the latter because your pancreas may not currently be making sufficient enzymes for proper digestion.

Have you had your vitamin and mineral levels checked? If there has been malabsorption in your gut for a while you may be deficient in things like Vt.D, B12, folate, iron, and also potassium, calcium and zinc. It is important to know these levels not just to make sure they are okay but, if not, to know what level of supplementation you will need.
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#7 katharos

 
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Posted 10 January 2011 - 12:29 PM

Hi all, I haven't been officially diagnosed, but I went off gluten in Sep. 2010, and it seems quite obvious from gluten reactions I've had since then that I have Celiac disease. Also had about 66% of the possible symptoms. Recently been realizing I have to avoid most dairy as well, although I seem to do fine with yogurt. I do seem to have some lingering symptoms though, and I was hoping to figure out if they'll just go away eventually, or if I should be taking something else. Before being gluten free, my main symptoms were depression, fatigue, and lack of energy. I'm off the depression meds since going gluten-free, and fatigue and energy levels have improved, but I'm still a bit lethargic most of the time. I'm taking a B-Complex (1 mL/day usually) and a multivitamin that has about 800 IU of Vit D. I had one weekend a few weeks after kicking the gluten that was just great, tons of energy, really cheerful, and then I had a gluten reaction and I never got back to that. Any experiences or advice you could share would be great!
Also, has anyone tried taking lactase enzymes to be able to process dairy? Or what about raw milk?
Thanks!
Asher
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#8 bincongo

 
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Posted 10 January 2011 - 01:05 PM

I have been diagnosed a Celiac for 6 months now. I found this site to be very helpful and I spent hours on the computer to learn more. I had to go Lactose free and soy free but yesterday I had a latte and forgot to take my usual lactose tablet and I had no problems. I really think I am actually healing even though it has only been six months. I had total villi atrophy, as bad as you can get. I will have more blood work done in 2 weeks. I did take iron, vitamin B1,B6 nd B12, folic acid and a good vitamin but I will stop these if my blood work improves and it shows my diet is working and showing less autoimmune reaction.
I would only stick with companies that say they are on totally gluten free lines. For those who have gluten intolerance or wheat allergy it isn't always as important but for Celiac's I feel it is important. It takes a lot of searching to find what is safe.
I have to add that I was only soy free in that I didn't eat food that called for soy sauce but I did not look at every label of all foods to see if it contained soy. I can't drink soy milk so I go with lactaid milk.
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Dx Celiac July 2010 by Endoscopy biopsy- had Endoscopy for another reason, not for possible Celiac
Lactose intolerant discovered August 2010
Hypothyroid Dx 2009. Sleep Apnea 2005

#9 Dixiebell

 
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Posted 10 January 2011 - 02:28 PM

Welcome katharos!
Have you had your vitamin levels checked recently? If not, you should do that to see where you stand on those and get a better idea of how much you need daily. My personal vit D is 3,000iu daily along with the B complex, fish oil and a multi.
Congrats on being able to stop anti depressants! :D I was able to do that too. The vitamins plus gluten-free help so much. I also don't do very much dairy. Maybe a little cheese a couple of times a week.
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Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#10 quincy

 
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Posted 12 January 2011 - 04:15 PM

I don't know if it qualifies as a digestive enzyme but I think it does as a probiotic, and that is Kefir. The brand I use, Lifeway, says it's 99% lactose free, so I'm thinking that's probably okay. I'm currently starting an elimination diet and dairy is off limits, but I think Kefir is okay. I guess now that I'm writing this I'd better double check with my doc. (Or if anyone out there knows the answer to that.) If you've never had it, it's like a liquidy yogurt, very lemony and a little fizzy. I use it when I take my vitamins/minerals to help them go down, but I also really like the taste. You may have to get used to is slowly.

sorry for the late response: I use an enzyme that bought through my nutritionist but you can get it online. Its called DigestzymeV by Ortho Molecular. Jarrow has a good one too if you don't want to spend as much money.

also, the probiotic I use I got from the health food store. Its called Ultra Flora Plus DF by Metagenics. Your local health food/organic store can recommend something as well I am sure. I had to introduce the probiotic slowly at first because it can cause some extra trips to the outhouse but once your body adjusts it is really a huge difference in your digestive health.
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