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Other Issues - Where To Start?


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#16 a1956chill

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Posted 27 February 2011 - 04:12 PM

Yikes - that's not good! What a hard way to find out what you shouldn't have!

Maybe I will have to try lamb, it sounds pretty good.

I had to modify the diet a bit so I could actually make this work. I decided to keep soy and almonds in for now so I can get the protein I need. Then in several weeks I will see how I feel, test eggs and then other nuts, and take out soy and almonds. Does that sound sensible? Of course this could all change with my appointment at the gastroenterologist tomorrow. :huh:

let us know how you make out at your appointment tomorrow
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


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#17 Joni63

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Posted 28 February 2011 - 05:40 PM

let us know how you make out at your appointment tomorrow


Oh geeze chill! What a day!

I have diverticulitis and am still working on getting gluten free flagyl. I did find the cipro though. Getting meds is certainly a chore in and of itself :( Next time I will get each one listed on a different perscription paper so I can pick and choose which pharmacy will fill each one! Ugh!

My iron is very low:

Total iron 32, Range 40 to 175
Serum ferritin 7, Range 10 to 232

I don't think it was this low when I was first diagnosed!

I guess the good news is I'm on the road to recovery now - hope it doesn't take too long!

I do plan on keeping most of the 8 allergens out for now and rotating a couple of them in about 4 to 6 weeks. I think ignoring the food intolerances (milk and caffiene are definatly out now) might have added to the diverticulitis. Darn peanut m&m's!
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Joni


Dx'd with Celiac Disease 8/01/07

#18 a1956chill

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Posted 01 March 2011 - 02:49 AM

[quote name='Joni63' timestamp='1298943637' post='679274']I guess the good news is I'm on the road to recovery now - hope it doesn't take too long![quote]


That is good news,, just remember to be patient with your self,, there may still be a few "bumps" in the road,but you are on the right track

much health to you :)
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#19 Joni63

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Posted 04 March 2011 - 12:11 PM

Thank you!

I did have a little spurt of energy yesterday and felt good for a couple hours today! I'm wiped out now, but its a start!

Trying to get that much needed housework done...ick.
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Joni


Dx'd with Celiac Disease 8/01/07

#20 Joni63

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Posted 08 March 2011 - 02:36 PM

Ok. I'm tired of tests. The more I read about it the more I think I have leaky gut and malapsorption and candida now that I've been on 2 antibiocs for 7 days to treat a *possible* h. pylori infection. I am terribly bloated, am extremely cautious about gluten (3 1/2 years on diet), and even an abdominal catscan showed nothing! Now they want to rescope me.

Should I just try probiotics and digestive enzymes? If I do, how quickly will I see results? Is there anything else?
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Joni


Dx'd with Celiac Disease 8/01/07

#21 mushroom

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Posted 08 March 2011 - 02:57 PM

I have seen a lot of recommendations to use L-glutamine to help heal a leaky gut.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#22 Joni63

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Posted 09 March 2011 - 10:26 AM

I have seen a lot of recommendations to use L-glutamine to help heal a leaky gut.


Thanks mushroom. This stomach pain is starting to get to me. Antibiotics didn't help...removing dairy, caffeine, eggs, and nuts did not help. I am constantly bloated and in stomach pain!
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Joni


Dx'd with Celiac Disease 8/01/07

#23 mushroom

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Posted 09 March 2011 - 12:54 PM

I have seen a lot of recommendations to use L-glutamine to help heal a leaky gut.


This recommendation was not intended to exclude probiotics and enzymes, which I thought you were already using :unsure: They have been my first line of treatment; I still take probiotics. I thought you were looking for something in addition.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#24 Joni63

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Posted 09 March 2011 - 06:11 PM

This recommendation was not intended to exclude probiotics and enzymes, which I thought you were already using :unsure: They have been my first line of treatment; I still take probiotics. I thought you were looking for something in addition.


I thought exactly what you meant...no worries!
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Joni


Dx'd with Celiac Disease 8/01/07

#25 irisheyes13

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Posted 14 March 2011 - 05:11 PM

For whatever it's worth, I react more violently to soy than gluten. You may want to try eliminating soy. It's tough because soy is in everything including cosmetics but it made a huge difference for me. Also have you eliminated all dairy or only lactose. It could be a casein problem. I got testing through enterolab.com and it helped with the guess work.
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Gluten Intolerant per Enterolab results 2011
Microscopic Colitis 2003
Grave's Disease 2009
gluten, casein, soy, egg and yeast free 2011

#26 Joni63

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Posted 15 March 2011 - 02:03 AM

For whatever it's worth, I react more violently to soy than gluten. You may want to try eliminating soy. It's tough because soy is in everything including cosmetics but it made a huge difference for me. Also have you eliminated all dairy or only lactose. It could be a casein problem. I got testing through enterolab.com and it helped with the guess work.


I did attempt to eliminate the soy, but wow yes it is in a lot of my vitamins. I have a pretty large stock pile of those that cost so much $$$. I did finally eliminate all dairy and my sinuses are so much clearer.

My doctor gave me the name of an allergist to visit and I'll be making the appt. this afternoon. Hoping to get some kind of answers. It's hard doing this on my own....it does feel like a guessing game. What kind of test does enterolab do? I know the allergy testing is not 100%. Just hoping for a guide and not too many surprises!

At least the stomach pain and belching are almost gone now. Unfortunately the bloating remains.
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Joni


Dx'd with Celiac Disease 8/01/07

#27 irisheyes13

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Posted 15 March 2011 - 07:01 AM

I did attempt to eliminate the soy, but wow yes it is in a lot of my vitamins. I have a pretty large stock pile of those that cost so much $$$. I did finally eliminate all dairy and my sinuses are so much clearer.

My doctor gave me the name of an allergist to visit and I'll be making the appt. this afternoon. Hoping to get some kind of answers. It's hard doing this on my own....it does feel like a guessing game. What kind of test does enterolab do? I know the allergy testing is not 100%. Just hoping for a guide and not too many surprises!

At least the stomach pain and belching are almost gone now. Unfortunately the bloating remains.

Glad to hear some of the symptoms are easing for you and good luck with the appointment.

Enterolab does testing for gluten, soy, casein, chicken egg and yeast as well as genetic testing. You can order the test yourself without a script and you pay for the tests directly and some insurances will reimburse for the testing. I found it very helpful but still feel like I have additional intolerances which I need to narrow down.

I hear you on soy in vitamins. I have thrown out a bunch myself as well as ALL lipsticks and lip balms. Freeda vitamins are all gluten, soy and casein free and pricing is reasonable.
  • 0
Gluten Intolerant per Enterolab results 2011
Microscopic Colitis 2003
Grave's Disease 2009
gluten, casein, soy, egg and yeast free 2011

#28 Joni63

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Posted 15 March 2011 - 12:42 PM

Glad to hear some of the symptoms are easing for you and good luck with the appointment.

Enterolab does testing for gluten, soy, casein, chicken egg and yeast as well as genetic testing. You can order the test yourself without a script and you pay for the tests directly and some insurances will reimburse for the testing. I found it very helpful but still feel like I have additional intolerances which I need to narrow down.

I hear you on soy in vitamins. I have thrown out a bunch myself as well as ALL lipsticks and lip balms. Freeda vitamins are all gluten, soy and casein free and pricing is reasonable.


Thank you irisheyes13. I never answered your question about casein...I did eliminate it totally. A couple days after I totally stopped eating it, my sinuses cleared up completely.

On a good note, had a 2 week check up with the gastro yesterday and my catscan showed NO diverticulitus - yay I'm cleared to eat nuts, seeds and popcorn again! Wooohooo!!!
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Joni


Dx'd with Celiac Disease 8/01/07

#29 irisheyes13

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Posted 15 March 2011 - 01:22 PM

Good for you Joni! It's always fun to be able to add a variety back into our diet and more importantly that you no longer show signs of diverticulitis.

I am a big fan of Enterolab testing since I finally got some answers recently after YEARS of suffering with no answers from multiple GI physicians. None ever suggested going gluten free or anything free for that matter after my endoscopy came back negative; as a matter of fact they told me to feel free to eat all the gluten I wanted after I went gluten free for 1 month. I want to also mention that I am in no way affiliated with or have any vested interest in the lab. I named the lab testing in two posts and I have been flagged as a potential spammer but I am just enthusiastic about finally feeling better.

Let me know what you think about the lamb. I have never tried it as well. I remember my grandmother cooking leg of lamb when I was a kid and hated the smell but maybe it's time to give it a try.
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Gluten Intolerant per Enterolab results 2011
Microscopic Colitis 2003
Grave's Disease 2009
gluten, casein, soy, egg and yeast free 2011

#30 Joni63

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Posted 15 March 2011 - 02:17 PM

Yes, thank you -it is a relief. Let me tell you though...he wanted to do a colonoscopy, but was refusing to do an endoscope. I figured if I was going to get one test and prep for it, I might as well have both done. He said there was no need since I know I have celiac disease and am gluten free. Funny all my symptoms were on the left side just below the rib cage...sounds like endoscope territory to me. I'm not going back there again...2 local GI's down. One day I will find a good one...or at least one that will listen. My family doctor is pretty good about listening and testing me for the tests I really believe I should have. And I have a great Nurse Practitioner I see for vitamins and nutritional advice.

I'm glad you found Enterolab and their tests. Many people on this forum have used them when doctors refused to test them or they were seeking answers. I totally understand your enthusiasm about them. Finding answers and feeling better means so much!

How long have you been gluten free? How long did it take you to find out you needed to be gluten free?
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Joni


Dx'd with Celiac Disease 8/01/07


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