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Celiac Testing - What Should I Expect? (And A Backstory)

symptoms endoscopy intolerance

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#1 sand0and0oceans

 
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Posted 31 October 2012 - 07:06 PM

I think I might have celiac disease, have scheduled some doctors appointments and need some advice.

I'm 22, and after 7 years of increasing "food allergy" symptoms I finally decided to get a food allergy test. It was the IgG test, though, which some argue isn't worth doing at all. However, I tested "avoid" on the sliding scale for gluten, gliadin, and wheat (among a few other things, but I'm hoping to heal my gut and reintroduce those others slowly).

Around January I was starting to hear a lot about celiac disease, and after looking at the symptoms decided that it was a possibility for me. I was experiencing flatulence, diarrhea, bloating, fatigue, the list goes on! I tried half-heartedly to stay gluten-free, but couldn't really stick to it because I always came back to the thought "but what if I'm doing this all for nothing!" When those IgG test results came back, though, I took my last bite of gluten a day later and said goodbye to wheat forever (or so I thought).

Then, in the past few weeks, I've just really been wanting to get tested, diagnosed, the whole shebang. There are a few reasons behind this. 1) simple curiosity 2) so little is known about "gluten intolerance" that maybe if I'm just gluten intolerant and don't have celiac disease there may be different options for me down the road, 3) If I do have celiac disease, I'd like to be able to participate in clinical trials to help other folks with the same disease... and of course there are more. So long story short (too late), I scheduled a visit with a gastro and started eating gluten again. I thought it would be exciting to eat a bagel and pizza and yummy stuff again, but boy was I wrong!

The first day of my gluten challenge I went into Subway and literally felt like a kid in a candy store, with the world at my disposal! I was so excited, but also felt pretty strange, since I had gone through this grieving process for food, and had finally come to terms with the fact that I just wouldn't be eating wheat bread again. But I finally bit into it and, eh, it wasn't as good as I had anticipated. But about half an hour later is when it really went downhill. I had a migraine, bloating, shortness of breath. Ugh, my first gluten meal and I couldn't even comprehend the thought of doing that for an entire month!

Here are my symptoms, after a week of eating gluten:
- headaches (started as migraines the first few days, now are better but still pretty bad)
- bloating
- diarrhea
- flatulence
- shortness of breath (I'm always feeling like I can't get a deep breath)
- VERY dry skin (I've battled with dry skin my entire life, except for the 3 months that I was completely gluten-free)
- Heartburn (I had acid reflux as an infant, and started getting frequent heartburn around the age of 11. I have been on and off of, but mostly on, antacids since then, except for the last 3 months the heartburn has gone away!)
- ADHD symptoms returning (have been medicated for this, but it wasn't a problem when gluten free)
- Fatigue
- Nasal Congestion (though I am a preschool teacher, so this may just be a bug from one of my kids, hard to tell where the sore throats and stuffy noses come from!)
- Raynaud's symptoms increasing (I was diagnosed with Raynaud's phenomenon around age 13, screened for some types of LUPUS, etc. I hadn't really noticed it lately, but my gluten-free months were summer, so the colder weather may have something to do with this, so it's auto-immune, so might there be a link?)

Questions:
What should I expect from my doctor visit? I won't get into details about health insurance, but due to the HMO zoning (I live in Idaho and am insured in New York) I will only be in the proper area to get office visits covered for 3 days. Luckily, even though I'm a new patient, I was allowed to schedule an initial consult with the gastro and then an endoscopy for two days later, even though he hasn't seen me before. But now I'm just worried that I'll get there and he won't want to do the endoscopy, will want to do more testing that will take longer than the 3 days I have.

What should I ask during the consult? Is there any specific testing that I should request, should I go prepared with a list of symptoms? I've just not dealt with doctors for celiac disease before, and haven't even been to the doctor in a little over 2 years, so I'm kind of terrified of not asking the right questions, pushing the right buttons, to get what I want, which is ultimately a celiac diagnosis, or the knowledge that it's not what I have. Anyone who has been though this with any advice for me, I would so appreciate it. Even some advice about how to get through the gluten challenge, because I feel like it's already sucked the life out of me and I still have 3 more weeks to go!

I apologize for writing a book, I just didn't really know where to start and figured the more you know, the more advice you'd have for me. Thanks in advance for your help :)

Edited by sand0and0oceans, 31 October 2012 - 07:13 PM.

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#2 GottaSki

 
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Posted 31 October 2012 - 07:51 PM

Before I get to suggestions for your GI appointment - you seem to have a possible gluten allergy - an allergic reaction is nothing to take lightly. If your breathing difficulty/nasal congestion is escalating, you need to call your primary to order an epi-pen. The allergic response can worsen suddenly and is nothing to mess around with.

That being said - you can have Celiac Disease, Non-Celiac Gluten Intolerance (NCGI) AND/or an allergy to Gluten. Your symptoms do indicate that Celiac or NCGI is a possibility so it is a good thing that you are going to see a GI for further testing. Not all Gasterenterologists have training or experience with testing and treating Celiac Disease, so it is a VERY good idea to go to the appt with a written list of all your symptoms prior to removing gluten, what symptoms improved and new symptoms.

I am amazed that they made you an appointment for endoscopy without being seen - so I'd guess they understand your time constraints and will not cancel the endo.

If I'm remembering your story correctly, you have not had Celiac blood testing yet. I don't know if it's possible for you to have the blood drawn before you go to the initial GI appt - perhaps your primary can order them and you can take copies with you.

Good Luck to you :)

Full Celiac Blood Panel:

Total Serum IgA
Tissue Transglutaminase IgA and IgG
Endomysial Antibody IgA
Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. You may want to have these drawn at the same time as the Celiac panel.

Bs, D, K, Iron, Ferritin, Copper and Zinc
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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 :)


#3 1desperateladysaved

 
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Posted 01 November 2012 - 04:49 AM

Before I get to suggestions for your GI appointment - you seem to have a possible gluten allergy - an allergic reaction is nothing to take lightly. If your breathing difficulty/nasal congestion is escalating, you need to call your primary to order an epi-pen. The allergic response can worsen suddenly and is nothing to mess around with.

That being said - you can have Celiac Disease, Non-Celiac Gluten Intolerance (NCGI) AND/or an allergy to Gluten. Your symptoms do indicate that Celiac or NCGI is a possibility so it is a good thing that you are going to see a GI for further testing. Not all Gasterenterologists have training or experience with testing and treating Celiac Disease, so it is a VERY good idea to go to the appt with a written list of all your symptoms prior to removing gluten, what symptoms improved and new symptoms.

I am amazed that they made you an appointment for endoscopy without being seen - so I'd guess they understand your time constraints and will not cancel the endo.

If I'm remembering your story correctly, you have not had Celiac blood testing yet. I don't know if it's possible for you to have the blood drawn before you go to the initial GI appt - perhaps your primary can order them and you can take copies with you.

Good Luck to you :)

Full Celiac Blood Panel:

Total Serum IgA
Tissue Transglutaminase IgA and IgG
Endomysial Antibody IgA
Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. You may want to have these drawn at the same time as the Celiac panel.

Bs, D, K, Iron, Ferritin, Copper and Zinc


I think Potassium and magnesium ar also often short.
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#4 sand0and0oceans

 
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Posted 01 November 2012 - 05:20 AM

Thanks for the advice! I want to go in there with as much knowledge as possible, I want to approach these appointments with the most information possible, if I know what tests I might need, for example, perhaps the doctor will take me more seriously. (I've never met him before, he could be a really great guy, I'm just always weary about doctors not taking symptoms seriously, for whatever reason.)

I didn't realize about the vitamin D deficiency; I did know that celiac disease could cause your body to not absorb nutrients, I just didn't know which ones. I've always gotten sun burnt really easily, which may have a lot to do with the fact that I'm fair-skinned, but this summer I was reading about sunburn and vitamin D deficiencies. I started taking a vitamin D supplement and stopped getting sunburns as frequently and as bad. Maybe celiac/NCGI is behind this, too! I would just love some answers. I know that gluten is the problem, I just want to know what else is going on with my insides :/

Before I get to suggestions for your GI appointment - you seem to have a possible gluten allergy - an allergic reaction is nothing to take lightly. If your breathing difficulty/nasal congestion is escalating, you need to call your primary to order an epi-pen. The allergic response can worsen suddenly and is nothing to mess around with.


I never thought about that, but I also get wheezy and shortness of breath when I eat dairy. I never imagined that I could have a bad allergy to these foods, mainly because I've been eating wheat and dairy for 22 years, but I will definitely discuss this possibility with my doctor.

If I'm remembering your story correctly, you have not had Celiac blood testing yet. I don't know if it's possible for you to have the blood drawn before you go to the initial GI appt - perhaps your primary can order them and you can take copies with you.


Unfortunately only emergency room visits are covered outside of my HMO zone, and I haven't seen my PCP in 2 1/2 years, he's not very helpful, but at least agreed to give me a referral to the GI if I come in for a physical right before my GI consult, but if he changes his mind and deems a GI visit "unnecessary" and doesn't tell the insurance he agrees that I need to see one, I need to pay out of pocket anyway. So really I need to hope that my PCP knows even the slightest bit about gluten intolerance. (I absolutely hate insurance!)

Thanks for your help, I'm still a bit nervous, but it sounds like it was a good idea for me to have a journal of my symptoms each day. I did stop a few days ago because nothing was really changing, though.
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#5 GottaSki

 
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Posted 01 November 2012 - 05:41 AM

Thanks for your help, I'm still a bit nervous, but it sounds like it was a good idea for me to have a journal of my symptoms each day. I did stop a few days ago because nothing was really changing, though.


Reduce the journal to a one page bullet point list of symptoms, organized into:

-before gluten removal
-improvement after gluten removal
-after reintroduction of gluten

Much easier to use the list than a journal when speaking with the doc - bring the journal but have the list in your hand along with a list of questions and necessary blood work.

Here is a paper that describes the correct biopsy procedure - read and add to items to bring with you to your appts:

http://www.charlotte...r_diagnosis.pdf

Once you have completed all testing it is time to remove gluten - do not remove or reduce gluten ingestion until the tests are done - UNLESS you find your allergy symptoms are increasing!

Take care - you are doing the best thing - it is wise to educate yourself before your appointment.
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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 :)


#6 GFinDC

 
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Posted 01 November 2012 - 06:36 AM

Hi,

It would be good to talk to the doctor before hand. Ask if you can send your symptoms before hand via email or fax. Make sure they know you are only available for the three days. Same with the GI, get the info to them before showing up. And let them know you are thinking of celiac as a possible cause of the symptoms.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 GottaSki

 
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Posted 01 November 2012 - 06:43 AM

Hi,

It would be good to talk to the doctor before hand. Ask if you can send your symptoms before hand via email or fax. Make sure they know you are only available or the three days. Same with the GI, get the info to them before showing up. And let them know you are thinking of celiac as a possible cause of the symptoms.

Really good idea :)

Also wanted to add...if you have any skin issues that would show in photographs - take pics - I found it incredibly helpful as every time I got to the doc's office my rashes had disappeared or were much improved...a picture is indeed worth a thousand words ;)
  • 0

-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 sand0and0oceans

 
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Posted 03 November 2012 - 08:19 AM

Thanks for all of the information, everyone. It's good to know that I have a support system that I can turn to of people who have already gone through this! And it seems like if the test results come back negative for celiac I have a great resource to turn to anyway, because I definitely have an issue with gluten.
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#9 sand0and0oceans

 
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Posted 10 November 2012 - 06:59 PM

I have another question before my appointment.

The results for my IgG test aren't displayed in the numbers that I've been seeing on here. My Anti-Gliadin IgG was 514, the guide said that a result under 140 would be "normal." But the only scales I can find online show that a result under 10 is "normal."

Can anyone help me interpret this?
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#10 frieze

 
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Posted 11 November 2012 - 09:41 AM

I have another question before my appointment.

The results for my IgG test aren't displayed in the numbers that I've been seeing on here. My Anti-Gliadin IgG was 514, the guide said that a result under 140 would be "normal." But the only scales I can find online show that a result under 10 is "normal."

Can anyone help me interpret this?

each lab has its own scale....obviously you are + on that scale!
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#11 GFinDC

 
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Posted 11 November 2012 - 10:31 AM

Hmm, well, each lab puts out their own scales for the test results. So one labs scale of good vs bad readings can be different from another labs. If your lab results say 140 is normal and yours came in at a much higher level then that seems to be a clear indication of an autoimmune response. IE celiac disease. The lab should provide the ranges for the tests, including what is considered a positive test.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul





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