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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

A Re-Test ...sigh
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3 posts in this topic

Hi all. I'm new here. Brief history: my daughter (4) had chronic mouth eczema. Tried elimination diets, with milk, then eggs. There was a bit of improvement with the milk, but it never went away. Then I researched gluten. As I researched it I realized I had many of the adult symptoms (sores that never heal, a "celiac rash on my bottom, thighs, and under arms, inability to loose weight (after my pregnancies ...I used to be very fit and in the Air Force!)

Sooooo, at the beginning of June we went gluten free. After only a week, my daughter was completely healed (although she's been having an outbreak since she started kindergarten ), and my sores were finally healing!

I had the blood test after being gluten-free for 8 days. It was negative. All was going fine being gluten-free until I passed blood (a lot) in my stool 2x's. I then started to see a gastologist. I started having some mystery swelling/bloating. I would swell 5" and gain 8lbs! It was debilitating! I've had an ultra sound, a CT scan, an x-ray, an endoscopy, & colonoscopy since. All come up picture perfect! My dr was boggled and frankly had lost confidence, so I switched to another dr and hospital.

New dr thinks I may have had false positives on my celiac tests. 8days gluten-free for the blood test and 4 months gluten-free for the biopsy. So per new dr's orders I Am on a high gluten diet for 2 weeks, for the blood and biopsy tests.

I'm only 5 days in and I've got huge boils and I'm breaking out again. :(. It's so painful. Now the odd thing.....I'm not bloating like as bad as I was before??? Wth?

These tests suck, but I know that every needle and, probe, & biopsy, is one I save my daughter from. That keeps me strong.

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Welcome to the board.

 

Eating gluten for only two weeks might not be enough time to give you an accurate result. 6 weeks is usually the norm. When you get your results, if they are negative, I would compare them to the first result to look for changes.

 

That being said, two weeks might be enough time for a good biopsy. Make sure they take many samples; eight is a good number.

 

If you still end up with negative tests, you might want to consider non-celiac gluten intolerance (NCGI) which has all the same symptoms as celiac disease minus the villi damage (so blood tests and biopsies are negative). It sounds like you and your daughter definitely have a gluten intolerance, so I hope you will bothe continue with the gluten-free diet in the long run.

 

Best wishes.  :)

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I can save you a few weeks of torture and the gastrointestinal tests, you'll still need the blood work done though. Your blisters are characteristic of Dermatitis herpetiformis (DH) an autoimmune blistering disorder also a symptom some get with a Celiac.

 

You need to see a Dermatologist familiar with Celiac and DH and have a skin biopsy done to check for the presence of the antibodies for Celiac in the skin. That is where they collect with DH.  The test must be done 3 to 5 mm away from an active lesion (the blisters). That is then looked at under a microscope where the antibodies can be seen in the skin.

 

A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA.

You need to have the sample looked at by someone who knows what their looking for or there can be an error in the reading also if the wrong sample is taken you'll have to have another done do to the first one being ruined. A proper sample does Not include part of the blister since the fluid from the blister can distort the antibodies under the microscope resulting in an inaccurate reading.

I've been through this many times before and the test being done wrong resulted in repeated testing. 


http://celiac.nih.gov/Dermatitis.aspx

 

Do some more research on DH on your own then take your findings to your doctor and get in to see a dermatologist asap. 

 

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      I wanted to come back and give an update. I decided to have my rash biopsied when I got home from vacation and the results thankfully came back positive for DH. What really prompted me to go ahead with that was how reliably the rash would worsen within mere hours of eating gluten. I figured it would be the easiest way for me to definitely know and since I could actually see the damage I was pretty confident by eating gluten until the appointment something would show up. Luckily my experiments of going multiple days here and there in the weeks prior to the test didn't effect the results. (Obviously that probably isn't recommended and I was taking a chance at inconclusive results by going ahead with it so I'm fortunate I got the positive results I expected.) The dermatologist wants me to see a GI doc but for now I'm holding off on doing that because of all the reasons I mentioned previously. It is my understanding that DH qualifies me for the tax write off for food and the small intestine biopsy would just be a technicality and see how much intestinal damage is present. I will follow up with my family doc soon to do blood work and check for any deficiencies. Since finding out I've done pretty well. I did discover gluten in my shampoo after wondering why my elbows had flared up when I hadn't eaten gluten that day. I had gluten unintentionally this weekend in some sushi and I'm recovering from that at the moment but it hasn't been too bad compared to how I've felt most days for the last year and a half while eating it. I did connect with a lady in my ED recovery group who has celiac and we have been talking about navigating gluten free in the context of recovery/remission from anorexia. I think part of me was scared I'd become afraid of food again but I think as long as my only rule is to replace gluten I will be fine.  Now my latest gluten discovery is in my home hair color. I was about to color my grays when I read the label and noticed one ingredient was wheat gluten. I guess I'll exchange that for something different. If I was getting it done at a salon I probably wouldn't worry because of the way they rinse it out with your head tipped back in the bowl but at home I think it's harder to keep the water from running into my mouth accidentally. If I hadn't had the shampoo incident I probably wouldn't be so cautious. I'm sure some people can relate to trying to get well and not wanting to make things worse again! I hope everyone here is doing well!
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