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dfwally

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dfwally Newbie
dfwally
Posted

Since I had my daughter 3 years ago I've known something was different. I'm constantly tired, my joints hurt, I have continuous bouts of diarrhea, unexplained stomach pain (had ct done and found nothing), horrible migraines, worsening asthma/bouts of bronchitis, hair loss, dry mouth and eyes. Finally after dealing with my doctor blowing me off for years, I scheduled myself an appointment with a highly recommended GI doctor. I'm not sure what he saw in my blood results, but the office called and left me a message today saying I tested positive (blood) for Celiacs and that I should avoid all wheat and gluten until my follow-up on the 9th. He also did a colonoscopy (before the blood work came back) and found some inflammation so he took biopsies. I haven't heard from the biopsies yet. I do have an aunt that also has celiacs, and my mother has sjogrens (she wonders if she has celiacs also). Does anyone have any experience with Celiacs AND sjogrens together? Could the Celiacs itself cause the fatigue, joint pain, and dryness? Where do I start with the gluten free diet? It seems like its going to be such a big life change! I've felt bad for so long...not horribly bad, just not like me. One last question! Sorry to bounce around. Should I have my daughter tested? She's growing fine... sometimes she a bit constipated but other than that no intestinal problems. She does have horrible asthma that lands her in the hospital at least once every 2-3 months.

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shadowicewolf Proficient
shadowicewolf
Posted

Feel free to go gluten free right away.

 

Celiac is genetic so any first degree relatives should be tested (such as your daughter). Should she test negative, it is recommended to be retested every 2 to 3 years.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

welcome  :)

 

I would request a copy of your blood test to make sure a complete celiac panel was run.  You can post the results here when you get them for others to comment.

 

A complete celiac blood panel is the following:

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

Open Original Shared Link

 
although it is great that they did a colonoscopy since they found inflammation and it is possible they might have reached a tiny part of the ileum (last part of the small intestine), celiac testing is found through endoscopy instead of colonoscopy.  Since your follow-up is the 9th, and if they decide to schedule you for an endoscopy, which I'd imagine they would since you said your blood came back back after the colonoscopy, keep eating gluten until ALL testing is completed.  Make sure they take at least 6 biopsies during the endoscopy.  
 
Autoimmune diseases like to have a buddy, so it would be entirely possible to have sjogrens and celiac together.
 
You should also get tested for vit/min deficiencies:

Vitamin/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamin B-12

Folic Acid

Vitamin A, D, E, K

Ferritin

Iron

Magnesium

Zinc

Copper

Niacin

Riboflavin

C-Reactive Protein

Good info from University of Chicago Celiac Center:

Open Original Shared Link

 

so I would say get a copy of your blood results and colonoscopy results, keep eating gluten, push for an endoscopy and get your nutrients levels tested. Here's a great link to help regarding the gluten-free diet:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

good luck!

 
 

Since I had my daughter 3 years ago I've known something was different. I'm constantly tired, my joints hurt, I have continuous bouts of diarrhea, unexplained stomach pain (had ct done and found nothing), horrible migraines, worsening asthma/bouts of bronchitis, hair loss, dry mouth and eyes. Finally after dealing with my doctor blowing me off for years, I scheduled myself an appointment with a highly recommended GI doctor. I'm not sure what he saw in my blood results, but the office called and left me a message today saying I tested positive (blood) for Celiacs and that I should avoid all wheat and gluten until my follow-up on the 9th. He also did a colonoscopy (before the blood work came back) and found some inflammation so he took biopsies. I haven't heard from the biopsies yet. I do have an aunt that also has celiacs, and my mother has sjogrens (she wonders if she has celiacs also). Does anyone have any experience with Celiacs AND sjogrens together? Could the Celiacs itself cause the fatigue, joint pain, and dryness? Where do I start with the gluten free diet? It seems like its going to be such a big life change! I've felt bad for so long...not horribly bad, just not like me. One last question! Sorry to bounce around. Should I have my daughter tested? She's growing fine... sometimes she a bit constipated but other than that no intestinal problems. She does have horrible asthma that lands her in the hospital at least once every 2-3 months.

1desperateladysaved Proficient
1desperateladysaved
Posted

 "I've felt bad for so long...not horribly bad, just not like me."

 

It can be big changes at first.  Yet, when there is success, you will not feel so bad anymore!  It is worth it, take some steps and begin your journey.

 

Welcome to the forum.

 

D

dfwally Newbie
dfwally
Posted
  • Author

 

welcome  :)

 

I would request a copy of your blood test to make sure a complete celiac panel was run.  You can post the results here when you get them for others to comment.

 

A complete celiac blood panel is the following:

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

Open Original Shared Link

 
although it is great that they did a colonoscopy since they found inflammation and it is possible they might have reached a tiny part of the ileum (last part of the small intestine), celiac testing is found through endoscopy instead of colonoscopy.  Since your follow-up is the 9th, and if they decide to schedule you for an endoscopy, which I'd imagine they would since you said your blood came back back after the colonoscopy, keep eating gluten until ALL testing is completed.  Make sure they take at least 6 biopsies during the endoscopy.  
 
Autoimmune diseases like to have a buddy, so it would be entirely possible to have sjogrens and celiac together.
 
You should also get tested for vit/min deficiencies:

Vitamin/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamin B-12

Folic Acid

Vitamin A, D, E, K

Ferritin

Iron

Magnesium

Zinc

Copper

Niacin

Riboflavin

C-Reactive Protein

Good info from University of Chicago Celiac Center:

Open Original Shared Link

 

so I would say get a copy of your blood results and colonoscopy results, keep eating gluten, push for an endoscopy and get your nutrients levels tested. Here's a great link to help regarding the gluten-free diet:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

good luck!

 

On the post colonoscopy papers he said that he did get to take a biopsy from the ileum. I hate to have to pay for the endoscopy after I just paid for the colonoscopy;I definitely will though. He's a really good doctor... He thought it was just IBS but pushed to make sure nothing else was wrong. I'm sure he didn't think it was Celiac because I didn't mention half of my symptoms. Truthfully... I've felt crazy for the last year or so. I've felt like a hypochondriac! I requested my lab results and will post them when I get them. Did you know that there is an app for that?! lol. I'm taking your list of vitamin deficiency tests with me to my follow up.

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