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#1 MissyShelle

 
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Posted 06 March 2013 - 05:14 PM

Hi. I am 36  and new to all of this. I am awaiting an appointment with a doctor to discuss possible Gluten Intolerance or Celiacs disease. I have all the symptoms: rash, bloating, pain, low on Vit. D and B12, diarrhea/constipation, indigestion, tingling in fingers, cravings, etc. 

 

I also have a history (since I was 9 years old) of colon polyps. 

 

This past week has been the worst with stomach pain, bloating and the rash. I'm so tired of being itchy. I've gotten itchy before but this time is the worst. My neck, scalp, behind my knees, arms, and stomach are covered in the rash. 

 

Anyway, hoping to find answers soon. I want to feel normal again. 


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#2 1desperateladysaved

 
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Posted 06 March 2013 - 06:46 PM

Welcome, ***

I hope you will find answers too.

Diana


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#3 GottaSki

 
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Posted 06 March 2013 - 08:31 PM

Welcome Missy!

Make sure you read the Newbie 101 thread and ask any questions you may have. The diagnosis process for Celiac Disease can be frustrating - yet it sounds like you are aware of many of the often dismissed symptoms.

Here are the necessary tests - bring a list - just in case your doc is not up to speed....

Total Serum IgA
tTG - IgA and IgG
EMA - IgA
DGP - IgA and IgG

Nutrients = B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

Complete Blood Count

Complete Metabolic Panel

AND...you mentioned itching - if there is an active rash - a dermatologist that knows how to take a sample for celiac - dermatitis hepiformus -DH-apologies for sp?

Good luck to you :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 MissyShelle

 
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Posted 07 March 2013 - 06:32 AM

Welcome Missy!

Make sure you read the Newbie 101 thread and ask any questions you may have. The diagnosis process for Celiac Disease can be frustrating - yet it sounds like you are aware of many of the often dismissed symptoms.

Here are the necessary tests - bring a list - just in case your doc is not up to speed....

Total Serum IgA
tTG - IgA and IgG
EMA - IgA
DGP - IgA and IgG

Nutrients = B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

Complete Blood Count

Complete Metabolic Panel

AND...you mentioned itching - if there is an active rash - a dermatologist that knows how to take a sample for celiac - dermatitis hepiformus -DH-apologies for sp?

Good luck to you :)

Thank you for the information. I'm feeling pretty miserable today. I ate really well yesterday. However, last night, my daughter made baked potatoes and asked if I wanted half of one. I thought potatoes were okay so said yes. However, I'm not sure what she put on them because within an hour, I was bloated, in pain and my rash is spreading today. I'm tempted to just live on fruits and water for a few days. I'm scared of eating anymore. 

 

About the rash, from my research of it, DH has blisters. Mine is just clusters of red dots that are very itchy. Some are larger than others and the rash is raised. But there are no blisters. 

 

Anyway, I will read more on here as I  get time and wait to see my doctor. 

 

Thank you everyone. 


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#5 kittty

 
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Posted 07 March 2013 - 07:31 AM

Thank you for the information. I'm feeling pretty miserable today. I ate really well yesterday. However, last night, my daughter made baked potatoes and asked if I wanted half of one. I thought potatoes were okay so said yes. However, I'm not sure what she put on them because within an hour, I was bloated, in pain and my rash is spreading today. I'm tempted to just live on fruits and water for a few days. I'm scared of eating anymore. 

 

Missy - have you already eliminated gluten from your diet? It's possible that you could have false-negatives on your tests if you aren't eating gluten, and the doctor may advise you to start eating gluten again before having any tests done. But wait and talk to the doctor first - my doc advised me not to go back on gluten because it made me so sick, and looked at other evidence to diagnose celiac.

 

Since potato made you react, have you looked into the possibility of a reaction to nightshades? Nightshade sensitivity has a lot of the same symptoms of celiac, and the two can exist together.


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#6 MissyShelle

 
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Posted 08 March 2013 - 01:43 PM

Missy - have you already eliminated gluten from your diet? It's possible that you could have false-negatives on your tests if you aren't eating gluten, and the doctor may advise you to start eating gluten again before having any tests done. But wait and talk to the doctor first - my doc advised me not to go back on gluten because it made me so sick, and looked at other evidence to diagnose celiac.

 

Since potato made you react, have you looked into the possibility of a reaction to nightshades? Nightshade sensitivity has a lot of the same symptoms of celiac, and the two can exist together.

I was going to eliminate gluten. I did for 2 days. My rash actually started clearing up. Yesterday, while at the doctor with my daughter, I asked the N.P. about my rash and told her I was going to get tested for Celiacs due to other symptoms. She stated it was a very good idea (waiting on insurance at this point) but also said to NOT go gluten free so the tests are accurate. So I ate some dinner last night and had a few beers with my girlfriends. Today, rash is worse, I look pregnant, I'm sluggish and I'm in pain. The rash is now getting some blisters. I just hope the insurance gets here this week so I can get to the doctor quickly. If I still have the rash, I'll make an appointment with a derm. 

 

This is ridiculous. I feel horrible and I've never looked so bad in my life. I wish I could get the test and NOT have to consume gluten but I don't want to go through all this to get a false negative. 


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#7 GottaSki

 
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Posted 08 March 2013 - 03:34 PM

Hi Missy...you need not overdo the gluten consumtion -- there is some arguement about how much gluten is enough, between 1/2 to 2 slices of bread a day is your target -- some have had a bit of luck eating their daily gluten in the evening to help limit the worse effects to sleep hours.

 

I find that a bath with a half a cup of baking soda can really calm the severe itch.

 

Hang in there :)

 

Edited to add:  Just re-read your post -- if you are in pain -- make that bath 1 or 2 cups epsom salt and a 1/2 cup baking soda for the itchies.


Edited by GottaSki, 08 March 2013 - 03:35 PM.

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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 MissyShelle

 
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Posted 09 March 2013 - 06:03 AM

Hi Missy...you need not overdo the gluten consumtion -- there is some arguement about how much gluten is enough, between 1/2 to 2 slices of bread a day is your target -- some have had a bit of luck eating their daily gluten in the evening to help limit the worse effects to sleep hours.

 

I find that a bath with a half a cup of baking soda can really calm the severe itch.

 

Hang in there :)

 

Edited to add:  Just re-read your post -- if you are in pain -- make that bath 1 or 2 cups epsom salt and a 1/2 cup baking soda for the itchies.

Yes, I think I am definitely going to stick to mainly gluten-free and just do the bread. I'll also do the bath. We keep Epsom salt on hand for my daughter, so I'll add that to my bath tonight. Thank you for all the answers everyone. My insurance paperwork should be here in the next week so I can get into the doctor's and hopefully get answers soon. 


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#9 MissyShelle

 
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Posted 11 March 2013 - 07:48 AM

Well, the rash was even worse yesterday so I went in to be seen. They gave me some anti-histamines and a shot to relieve symptoms. It's helped a little, mainly I just slept for 14 hours, ha! I did have a bit of gluten at breakfast this morning and already feel more itchy as well as nauseous and bloated. So I think that I'll be gluten-free the rest of the day. 

 

Also about the nightshades. I forgot but when I was little, anytime I ate potatoes or tomatoes, I would break out in hives and get really sick. So I am taking those foods off my list as well. 

 

The doctor I saw yesterday about the rash was very agreeable about me doing further checking into food allergies or Celiac, especially with my colon issues I already have. So that's  a good start. 

 

Again, ty for all of the advice. 


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