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Doc Tomorrow - Which Tests To Request?


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#1 Chirpy

 
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Posted 09 June 2010 - 03:42 PM

Hi All,

Brand new here. Will try to summarize.

Am seeing a dermatologist tomorrow. My regular gp has retired. I've been ignored for many symptoms by many doctors for years. I want to make sure I get this visit right tomorrow morning. Which tests are useful to have run if I suspect gluten intolerance? I'd like to make sure I suggest them to her. I'm thinking of any blood work, or skin scraping, or easy tests - but not the ones that require a scope and surgeon etc.

Background and symptoms:

Lactose intolerant for about 20 years.
Diagnosed fibromyalgia about 5 years ago.
Diagnosed IBS 15+ years ago. (swings between D and C and normal now, formerly was only D)

Family history of hypothyroidism - I'm borderline.
Mother is anemic and has liver being watched - she's elderly (mid-8o's) and cause has never been found. She just had her gall bladder removed.
(I've read these are hypothryoidism and anemia are important if they're in your family - are they?)

My symptoms:
Chronic Hives. Spent about a year (2004?) with daily hives. Now they're less frequent, but have picked up slightly lately.
I get canker sores in the roof of my mouth - for years - not all the time.

SKIN: In the last three weeks, I thought I was experiencing bug bites from chiggers. However, long after any possible exposure, I still get new ones almost every day. I am now thinking dermatitis herpetiformis. It looks just like the pictures I've seen online. Was getting them on legs (mostly ankles of legs), butt, elbows, and scalp.

Currently having an acne breakout that I can't quite explain.
I've always bloated in the evenings for years.
I do bruise somewhat easily.
Vertigo comes and goes - less frequently now.
Migraines are sometimes an issue for me - less now that I've ruled out some trigger foods.

Some months ago, I saw a doc when I had a really bad episode of ibs. He asked me if I was ever tested for gluten intolerance and said I should be. When I returned to him this week asking him to do those tests, he said that was not needed. He said it is so rare and the chances I have it are too slim. He thought I was nuts reminding him he brought it up in the first place.

With my hives, nightly benadryl helps - 25mg. 3x a day benadryl when they're active keeps them away. Allergist didn't want to test for gluten, said I should have a surgeon just scope me. No, thank you.

The doctor I see in the morning is a dermatologist. What do I specifically say to get her to take me seriously about being tested for gluten intolerance? Is there anything I specifically should, or should not mention?

Your help would be very appreciated!
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#2 ravenwoodglass

 
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Posted 09 June 2010 - 04:04 PM

Ask the doc to do a complete celiac panel with a total IGA. Since you are seeing a derm also request that a biopsy to look for DH be done. The biopsy needs to be from the skin next to the lesion not the lesion itself. When all your testing is done give the diet a strict try no matter what the results. You sure do sound like your in the right place.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Chirpy

 
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Posted 09 June 2010 - 04:17 PM

Thank you for helping me know what to ask for. I'll write that all down and take it with me.

And regardless of the results, I'm going to try going gluten free. It would be helpful to have some test to validate my loss of more foods from my already tight diet.

THANKS!


Ask the doc to do a complete celiac panel with a total IGA. Since you are seeing a derm also request that a biopsy to look for DH be done. The biopsy needs to be from the skin next to the lesion not the lesion itself. When all your testing is done give the diet a strict try no matter what the results. You sure do sound like your in the right place.


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#4 mushroom

 
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Posted 09 June 2010 - 04:27 PM

Hi All,

Brand new here. Will try to summarize.

Am seeing a dermatologist tomorrow. My regular gp has retired. I've been ignored for many symptoms by many doctors for years. I want to make sure I get this visit right tomorrow morning. Which tests are useful to have run if I suspect gluten intolerance? I'd like to make sure I suggest them to her. I'm thinking of any blood work, or skin scraping, or easy tests - but not the ones that require a scope and surgeon etc.

Background and symptoms:

Lactose intolerant for about 20 years.
Diagnosed fibromyalgia about 5 years ago.
Diagnosed IBS 15+ years ago. (swings between D and C and normal now, formerly was only D)

Family history of hypothyroidism - I'm borderline.
Mother is anemic and has liver being watched - she's elderly (mid-8o's) and cause has never been found. She just had her gall bladder removed.

(I've read these are hypothryoidism and anemia are important if they're in your family - are they?)

My symptoms:
Chronic Hives. Spent about a year (2004?) with daily hives. Now they're less frequent, but have picked up slightly lately.
I get canker sores in the roof of my mouth - for years - not all the time.

SKIN: In the last three weeks, I thought I was experiencing bug bites from chiggers. However, long after any possible exposure, I still get new ones almost every day. I am now thinking dermatitis herpetiformis. It looks just like the pictures I've seen online. Was getting them on legs (mostly ankles of legs), butt, elbows, and scalp.

Currently having an acne breakout that I can't quite explain.
I've always bloated in the evenings for years.
I do bruise somewhat easily.
Vertigo comes and goes - less frequently now.
Migraines are sometimes an issue for me - less now that I've ruled out some trigger foods.


Some months ago, I saw a doc when I had a really bad episode of ibs. He asked me if I was ever tested for gluten intolerance and said I should be. When I returned to him this week asking him to do those tests, he said that was not needed. He said it is so rare and the chances I have it are too slim. He thought I was nuts reminding him he brought it up in the first place.

With my hives, nightly benadryl helps - 25mg. 3x a day benadryl when they're active keeps them away. Allergist didn't want to test for gluten, said I should have a surgeon just scope me. No, thank you.

The doctor I see in the morning is a dermatologist. What do I specifically say to get her to take me seriously about being tested for gluten intolerance? Is there anything I specifically should, or should not mention?

Your help would be very appreciated!



Hi, and welcome to the forum.

All the bolded parts of your post are suggestive of celiac disease/gluten intolerance.

It's hard to tell about the possible dermatitis herpetiformis but a dermatologist is certainly the person to discuss it with. To test for it, she should take a biopsy of the skin adjacent to the lesion, not of the actual lesion itself, to check for antibodies.

The blood testing panel for celiac consists of the following:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA

The total serum IGA is important, because if you are not a person who makes antibodies the rest of the tests are invalid.

As for what to tell her, tell her your GP has retired, you currently don't have a GP, and you have the following symptoms, and just print out your post starting with symptoms.

The doctor who told you that celiac is rare is very out of date. If one in one hundred is rare then we have a lot of very rare diseases around. Not only that, but even if you are not actually celiac, you could well be "just" gluten intolerant, which can give you the same symptoms, the same problems, and requires the same gluten free diet. There are estimates out there that up to 30 percent of the current population may be gluten intolerant (Dr. Rodney Ford).

Good luck with your appointment and let us know how it goes.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 Skylark

 
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Posted 09 June 2010 - 04:47 PM

I agree. Get a celiac panel. The idea of telling your dermatologist that your GP retired and you didn't get a chance to talk to him is good.

Then try going off gluten no matter what it says! You have nothing to lose trying a gluten-free diet yourself for a couple months once the diagnostic process is done, and there are a lot of people with your kinds of symptoms who feel better off gluten even with negative celiac tests. (My mom is one.)

The significance of your mother's symptoms is that ideopathic anemia is considered to be a sign of celiac malabsorption, and hypothyroidism is also associated with celiac disease. Your mother should be tested for gluten intolerance too.
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#6 Chirpy

 
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Posted 09 June 2010 - 05:23 PM

Thank you, both, Skylark and Mushroom.

It is amazing seeing all of you who have these same symptoms (read a lot of your signatures now) - and knowing there is a real and valid reason behind it. I've never been satisfied with my fibromyalgia mystery disease. I mean, yeah, the symptoms are real, but there HAS to be something behind it. If I can nail down this gluten issue, I feel like I may have finally put a tangible cause out there for people to recognize, at least in my specific case. (But I digress)

I will DEFINITELY have my mother's doc consider doing celiac's testing for her after I finish with all of my stuff now. She'll have a fit and never follow the diet - because the woman practically lives on bread and cookies that she makes herself - but it would still be good to have it found.

There are a lot of symptoms and issues I didn't mention - but these major ones are adequate for now or I'll write a novel here. :)

So glad to have met you all. Thanks.


I agree. Get a celiac panel. The idea of telling your dermatologist that your GP retired and you didn't get a chance to talk to him is good.

Then try going off gluten no matter what it says! You have nothing to lose trying a gluten-free diet yourself for a couple months once the diagnostic process is done, and there are a lot of people with your kinds of symptoms who feel better off gluten even with negative celiac tests. (My mom is one.)

The significance of your mother's symptoms is that ideopathic anemia is considered to be a sign of celiac malabsorption, and hypothyroidism is also associated with celiac disease. Your mother should be tested for gluten intolerance too.


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#7 Chirpy

 
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Posted 09 June 2010 - 09:01 PM

Just thought of another question. Does being on allergy med ( benadryl / diphenhydramine ) interfere with the results of these tests? I can't really go off of it due to the hives.

I'll be sure to let you know how it goes tomorrow.
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#8 Chirpy

 
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Posted 10 June 2010 - 09:31 AM

Not a great appointment.

Brought my list - as you've already seen above. Brought the list of tests to request and request for biopsy NEXT TO the lesions.

Nurse seemed sympathetic and on board with my requests. However, heard her talking to the doctor in the hall and it seemed they were displeased with my self diagnosis. Great.

Derm treated me like I was a child, talking soothingly. She said, "well, I think we SHOULD run those tests so that you can get the results that you're not gluten intolerant and not have to worry about it anymore" I felt an inch tall, even though she was talking in a friendly quiet way, I knew she thought this was stupid.

Then she said, "We don't run those tests though." She looked in the computer a while, then said, "Oh, wait, here's one of them." Took her 10 minutes to find the tests to request for me. She's NOT familiar with this issue.

She did scrape directly on one of my older lesions, not next to it. (Froze it first with lidocaine. Hope I'm not allergic to that, too.) She said she didn't think those were really d.h. Great. Thanks, Doc. I wish she could have seen them when they were more active.

Looked at the acne, made lame suggestions. Could be your makeup. Could be hormonal. Could be stress. Do you want some antibiotics?

Asked specifically about makeup because I've been having a horrible time finding makeup that doesn't make me react in some way - she was sort of uninterested and offered generic response. Asked her about specific ingredients in makeup - she had no thoughts for me.

All in all, it was yet another appointment where I go home feeling like some nut case that they've humored, or laughed at when I walk out. I sooooo hate the medical profession as a whole. :(

Wasn't too interested in any of my symptoms.

They have no idea how long the test results will take. She said it could be 5-7 days, or it could be several weeks, they weren't familiar with running these tests. Guess they must not believe in gluten problems since they don't seem to run the tests. Even the allergist at this office wouldn't run the tests for me - now I understand.

I so hate this.
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#9 ravenwoodglass

 
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Posted 10 June 2010 - 12:15 PM

Not a great appointment.

Brought my list - as you've already seen above. Brought the list of tests to request and request for biopsy NEXT TO the lesions.

Nurse seemed sympathetic and on board with my requests. However, heard her talking to the doctor in the hall and it seemed they were displeased with my self diagnosis. Great.

Derm treated me like I was a child, talking soothingly. She said, "well, I think we SHOULD run those tests so that you can get the results that you're not gluten intolerant and not have to worry about it anymore" I felt an inch tall, even though she was talking in a friendly quiet way, I knew she thought this was stupid.

Then she said, "We don't run those tests though." She looked in the computer a while, then said, "Oh, wait, here's one of them." Took her 10 minutes to find the tests to request for me. She's NOT familiar with this issue.

She did scrape directly on one of my older lesions, not next to it. (Froze it first with lidocaine. Hope I'm not allergic to that, too.) She said she didn't think those were really d.h. Great. Thanks, Doc. I wish she could have seen them when they were more active.

Looked at the acne, made lame suggestions. Could be your makeup. Could be hormonal. Could be stress. Do you want some antibiotics?

Asked specifically about makeup because I've been having a horrible time finding makeup that doesn't make me react in some way - she was sort of uninterested and offered generic response. Asked her about specific ingredients in makeup - she had no thoughts for me.

All in all, it was yet another appointment where I go home feeling like some nut case that they've humored, or laughed at when I walk out. I sooooo hate the medical profession as a whole. :(

Wasn't too interested in any of my symptoms.

They have no idea how long the test results will take. She said it could be 5-7 days, or it could be several weeks, they weren't familiar with running these tests. Guess they must not believe in gluten problems since they don't seem to run the tests. Even the allergist at this office wouldn't run the tests for me - now I understand.

I so hate this.


I think there are a lot of us that can identify with what happened at that appointment. I am so sorry they were so misinformed. You may want to consider Enterolab or you do have the option of just trying the diet strictly and seeing if it helps.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 Chirpy

 
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Posted 11 June 2010 - 06:49 AM

Thanks for taking the time to let me know someone understands.

From here forward, I will only visit a doctor if there is no other alternative.

Regardless of what the results show, I'm taking matters into my own hands.
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#11 Chirpy

 
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Posted 11 June 2010 - 06:52 AM

PS: The lesion she scraped off of my neck has itched insanely since she did it. They even looked at it 30 minutes later - and said it looked okay to them. Is this why it is recommended to scrape NEXT TO and not the actual lesion itself??
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#12 mushroom

 
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Posted 11 June 2010 - 01:05 PM

PS: The lesion she scraped off of my neck has itched insanely since she did it. They even looked at it 30 minutes later - and said it looked okay to them. Is this why it is recommended to scrape NEXT TO and not the actual lesion itself??


As I understand it, the antibodies are not found in the lesion itself, but in the skin adjacent to it. You would only be able to see the antibodies in a lab - what they were looking for was something else. I have heard of another doctor doing this and only doing the biopsy adjacent if he "saw" something from the lesion.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#13 ravenwoodglass

 
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Posted 11 June 2010 - 03:12 PM

As I understand it, the antibodies are not found in the lesion itself, but in the skin adjacent to it. You would only be able to see the antibodies in a lab - what they were looking for was something else. I have heard of another doctor doing this and only doing the biopsy adjacent if he "saw" something from the lesion.


Yep, the doctor that did the biopsy had no idea what they were doing.

http://www.celiac.ni...Dermatitis.aspx

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#14 Chirpy

 
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Posted 11 June 2010 - 03:55 PM

It saddens me how badly the biopsy was botched by that doctor. From what you've explained (thank you by the way) not only will it not yield proper results, but I now am dealing with furious itchiness after the fact on my neck. I asked her to use one from my ankle but she said the neck heals faster. Even when I told her that I react to band-aids for some reason - she said, "oh that's very common" but didn't bother to replace it with something better.

I wish my former doc hadn't retired. Now I have nothing but idiots to choose from. What do they teach these people??? Sorry, but I'm just so angry.
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#15 Chirpy

 
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Posted 12 June 2010 - 06:01 AM

Just received an email notifying me of one test coming back already.

What does this mean?

IMMUNOGLOBULIN A
Printer friendly page

Click for general information about IMMUNOGLOBULIN A About this test
This result has been released by an automatic process. Your physician may not have had the opportunity to review this result.
Component Results
Component Your Value Standard Range Units Flag
IGA 372 mg/dL
Reference range: 68 to 378

If my number is 372 - but 378 is the acceptable high limit - does this mean I am borderline? If borderline, is that intolerant of gluten?

Please give me your experienced views.
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