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How should I go about testing?

amirenthsia

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amirenthsia Newbie
amirenthsia
Posted

I'm going to try to do a quick run down of what I've been through to find that I have a problem with gluten, and to anyone who reads it fully I'd like your opinion on the test for celiac. 

Freshman year: itchy red rash while running every day in PE, I'd always have granola bars or a snack before this class. I thought it was the shorts/detergent but changing them never did anything. I'm pretty sure the activity after consuming was causing it. I ignored it at the time though.

Senior year: (no more PE the other years) major stomach pains in the morning, did an elimination of ingredients, and started cutting gluten ONLY in the mornings. During that time I figured it was just a morning issue. General brain fog and tiredness had set in.

1st year College: Stomach pain in the morning continues, random diarrhea, got sick easier, still only cutting it in the mornings. Finally cut it entirely for 3 months to see how I'd do, and of course I didn't have all those issues anymore. I ended up cheating at Disneyland because....it was our last trip. Broke out in a blister rash on my arms and neck. The new sunscreen I used wasn't the culprit since it continued as I kept cheating.

Dermatologist visit: I kept eating gluten until my appointment, the blister rash continued, and of course the nausea/diarrhea followed. The doctor asked me what it could be. I told her I hadn't eaten gluten in a while so I figured that was the cause. She said "you have dermatitis herpitaformis, and need to stop eating gluten". She gave me Clocortolone Pivalate cream which cleared it up much faster. 

Now: It's been a year since that appointment. I didn't have any skin sample taken, blood work, etc. done since we didn't have much money. I feel like I want an official test done on Celiac to make sure it isn't just a gluten intolerance. I've heard that the dermatitis herp. skin sample can be cut out to prove it, or that there's the lengthy blood test via some form of doctor. I'd either have to start consuming gluten again for the skin sample or schedule an appointment for how long to consume gluten. I'm really scared to start having it again, and am in the process of finding a better general doctor due to him not caring.

Any suggestions are welcome, thank you for reading, and to any celiacs/intolerant in the Phoenix area where did you go for testing/how did you get it done?

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Ennis-TX Grand Master
Ennis-TX
Posted

Unfortunately for now the only way to diagnose celiac is to essentially poison yourself with gluten so the antibodies to it show up in your body, with most in the blood after building up in your intestines from consuming it for 8-12 weeks straight. And or 2 weeks so they can see the damage to the intestines with a endoscope and biopsy. Those with DH have the antibodies in the skins and normally have issues with other test then the skin biopsy. I will give you some links on the testing so you can see yourself, some go and do a gluten binge for the "gluten challenge" eating all the junk they will never be able to eat again, some find it so painful they just eat a slice of bread a day at night or a tsp of vital wheat gluten a night and try to sleep it off. BUT if you had DH this is a sign of celiac and if your doctor that saw it puts that in your file then your good on diagnosis.
Open Original Shared Link
Open Original Shared Link

GFinDC Veteran
GFinDC
Posted

Right, If you have DH, you have celiac disease.  Only people with celiac disease get DH.  The DH rash is the result of IgA antibodies to gluten being deposited in the skin.  They test for DH by taking a small biopsy sample of skin next to a DH lesion, not on it.  They check it for the IgA antibodies.

DH is often described as being very itchy.  It also tends to appear in a symetrical pattern on both sides of the body. 

CJ Russell Newbie
CJ Russell
Posted

Hi Amirenthsia, 2 of my co-workers get the same rash after eating gluten, and they have both been diagnosed with Celiac. I had a similar issue with wondering if I should start eating gluten again just to get the test. Since I get a migraine when I eat gluten, along with 'aura' symptoms that sent me to the hospital at one point thinking I was having a stroke, I decided that testing for celiac disease wasn't as important as not eating gluten. How important that test is for you is something only you can decide.

 

  • 3 weeks later...
amirenthsia Newbie
amirenthsia
Posted
  • Author

Little late but just wanted to say thanks to the above responders!

My insurance will now cover the blood test and my general Dr. wants to go ahead to make sure it's celiac. I'm fine with that, but...she believes I do NOT have to consume gluten to show the antibodies. This goes against everything I've read and I've tried to convince her that you need to eat it a while before the test.

Should I eat gluten before my blood test next week?  I think I've mostly decided that I will both for the antibody/rash to show up again if it does. I'm just not sure that it'd be long enough for a good amount of antibodies to show up provided it is celiac. 

squirmingitch Veteran
squirmingitch
Posted

 

Prior to blood testing we recommend 12 weeks of eating gluten.

From:

Open Original Shared Link

 

Print it out & take it to the doc. 

kareng Grand Master
kareng
Posted
4 minutes ago, amirenthsia said:

Little late but just wanted to say thanks to the above responders!

My insurance will now cover the blood test and my general Dr. wants to go ahead to make sure it's celiac. I'm fine with that, but...she believes I do NOT have to consume gluten to show the antibodies. This goes against everything I've read and I've tried to convince her that you need to eat it a while before the test.

Should I eat gluten before my blood test next week?  I think I've mostly decided that I will both for the antibody/rash to show up again if it does. I'm just not sure that it'd be long enough for a good amount of antibodies to show up provided it is celiac. 

Show her this info from actual doctors that are experts in Celiac before you take a blood test.  I don't want the doc to say you don't have Celaic because of an invalid blood test.  

 

Open Original Shared Link

 

Find out for sure

Antibody tests are accurate only when a patient is on a gluten-containing diet. Those concerned about celiac disease are strongly discouraged from starting a gluten-free diet without having had a firm diagnosis. Any change in the diet, even as briefly as a month or two, can complicate the diagnostic process.

 

Open Original Shared Link

 

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten.
  • Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013

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amirenthsia Newbie
amirenthsia
Posted
  • Author
2 hours ago, kareng said:

Show her this info from actual doctors that are experts in Celiac before you take a blood test.  I don't want the doc to say you don't have Celaic because of an invalid blood test.  

 

Open Original Shared Link

 

Find out for sure

Antibody tests are accurate only when a patient is on a gluten-containing diet. Those concerned about celiac disease are strongly discouraged from starting a gluten-free diet without having had a firm diagnosis. Any change in the diet, even as briefly as a month or two, can complicate the diagnostic process.

 

Open Original Shared Link

 

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten.
  • Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013

Thank you so much for this doc. I will print it/bring it on my phone for next week's visit so that she can better understand. 

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