Doc Tomorrow - Which Tests To Request?

[Chirpy]

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!

[ravenwoodglass]

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.

[Chirpy]

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.

[mushroom]

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.

[Skylark]

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.

[Chirpy]

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.

[Chirpy]

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.

[Chirpy]

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.

[ravenwoodglass]

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.

[Chirpy]

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.

[Chirpy]

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??

[mushroom]

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.

[ravenwoodglass]

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.

Open Original Shared Link

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.

[Chirpy]

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.

[Chirpy]

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

What does this mean?

IMMUNOGLOBULIN A

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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.

[psawyer]

This is, if I understand correctly, the total serum IGA result. This is a control which must be normal for the other test results to be valid. It says your immune system, overall, is working and producing antibodies.

The other tests are for specific antibodies which indicate celiac.

[Chirpy]

Thank you. So in this case, it doesn't matter that I was on the high end of normal - but the fact that it is within normal at all is a good thing.

Will wait and see on the rest of the tests.

[RoseTapper]

Oh, you're having a terrible ordeal! Many, if not most, of us have been through similar experiences, and they can be disheartening. I swear--dermatologists become dermatologists because they are not competent to be any other kind of doctor (sorry--I know that sounds bitter, but I went to probably a dozen dermatologists to get to the bottom of my DH....and they all failed me by telling me I simply had persistent acne). I get the impression that dermatologists don't continue to study skin issues once they receive their MD; otherwise, they would understand how to test for DH. Very sad.

In a case like yours, being faced with incompetency in all directions, you may very well have to take matters into your own hands. You're fortunate that if you have celiac or gluten intolerance, you really don't have much need for doctor. All you need to do is follow a strict, gluten-free diet. Of course, if you suffer from nutritional deficiencies, you may wish to get lab tests; otherwise, what's the point in discussing this matter with professionals who don't understand and don't care to learn more about the condition? I wish you luck in being gluten free, and I'm confident that you'll feel better shortly. However, with regard to your suspected DH, do know that iodine is also part of the formula that causes it. Until your DH resolves, you should avoid iodine (found in shellfish, iodized salt, asparagus, and dairy products that aren't organic). After it resolves, you can try to reintroduce iodine back into your diet; however, if you should accidentally ingest even a small amount of gluten and have also ingested iodine at the same time, you may break out again in DH.

[mushroom]

This looks like the total serum IGA test, which is run as a control for the other tests to see if you are an antibody maker (some people have very low antibody levels). Yours are in the normal range, so it means that the results of the other tests when they come back should be valid. If the total serum IGA is low, then it invalidates the other results.

[Chirpy]

Thanks for helping me feel less unique about this ordeal, RoseTapper. You may be on to something with your theory on dermatologists, sadly. Imagine, I had chosen her because she was educated at Yale. I'd chosen my allergist because he was educated at Harvard. Clearly, that isn't the end-all method for choosing a doctor.

When she looked at the problem I was having that extended to my scalp, she said, "oh my gosh, that's acne! Not that you can't have acne on your scalp of course, but I'm surprised." (not verbatim - but close enough). *sigh* Wish she'd have just looked harder, or thought about it. Wish too she'd have asked to see the dang canker sores, as I had a couple that day.

She didn't look at the lesions on my legs carefully - she didn't even get a scope, or light - just eyeballed them from her chair. Didn't bother looking at all at the ones on my elbow that are now just little bumps and won't go away.

Duly noted about the iodine and gluten. Thanks for letting me know. My family buys iodized salt exclusively ...

Thank you again for your support.

Mushroom - thanks for the further thoughts on the test. It sounds like since this test came through the way it did - my other tests should be a true indicator of whether I have gluten intolerance then?

It is possible that I don't have this disease. I could be all wrong. It just would be nice if the evaluation and tests could be conducted properly to make sure I'm right or wrong.

[mushroom]

Mushroom - thanks for the further thoughts on the test. It sounds like since this test came through the way it did - my other tests should be a true indicator of whether I have gluten intolerance then?

It is possible that I don't have this disease. I could be all wrong. It just would be nice if the evaluation and tests could be conducted properly to make sure I'm right or wrong.

You can count yourself lucky that your doctor actually ran the control test; many of them don't

Just a slight correction to your wording - your other tests should be a true indicator of whether or not you have diagnosable celiac disease. It is still possible to test negative on the tests and be intolerant of gluten, unfortunately; even to be celiac. Some people with negative blood work test positive on biopsy. I would estimate that most people who test negative on both blood work and biopsy feel better if they stop eating gluten. That is why it is suggested that after all testing (including potential biopsy) is completed, that you give the gluten free diet a good trial. Doctors generally are not aware of non-celiac gluten intolerance and will tell you, upon negative testing, that it's okay for you to eat gluten since you are not celiac. But if you are a non-celiac gluten intolerant you can do yourself as much harm eating gluten as if you were celiac

I know you probably didn't want to hear this, but the testing is not that accurate, and not necessarily indicative of what gluten is doing to your body. So I hope your results give you a diagnosis on which to "hang your hat".

[Chirpy]

Just received additional results via email.

Component Your Value Standard Range Units Flag

IGA UNITS: 12 UNITS

Reference range: <20

IGG UNITS: 5 UNITS

Reference range: <20

TTG AB,IGA 13 Units

Reference range: <20

TTG AB, IGG 4 UNITS

Reference range: <20

It looks like my results are all way below the reference range. I assume getting close to, or above 20 would have been a bad sign. Mine are all well below. So this is a good thing, right?

[Chirpy]

I think this must be the biopsy result? This might be the last of my test results.

ENDOMYSIAL AB,IGA <10

Reference range: <10

(NOTE)

TEST PERFORMED AT SPECIALTY LABORATORIES INC

27027 TOURNEY ROAD

VALENCIA, CA 91355

Does anyone know if I've interpreted what these results mean correctly? When it says reference range <20 and <10 and I'm well below those, is that a good thing - meaning that according to this test I'm testing negative for celiacs and gluten intolerance?

[mushroom]

Does anyone know if I've interpreted what these results mean correctly? When it says reference range <20 and <10 and I'm well below those, is that a good thing - meaning that according to this test I'm testing negative for celiacs and gluten intolerance?

Well, you got it half right . It does mean that you have tested negative for celiac disease. It says nothing, however, about gluten intolerance, which is most probably what you have. There is really no test for gluten intolerance except trying the diet and seeing if it works for you. The only hint of a test for gluten intolerance is one of exclusion, not inclusion, and even that is very questionable - the genetic marker test to see if you carry genes predisposing you to gluten intolerance. Even if you do, that does not mean that you will have it, but with your symptoms and the negative celiac test I would guess that you do.

So now the fun part starts, where you play detective and discover where the food processors hide their gluten

[Chirpy]

I'm confused. I was reading the main part of the site, parts written by this site's owner, Scott Adams. Here: https://www.celiac.com/articles/1108/1/Celiac-Disease-Screening/Page1.html

He doesn't mention that test coming back negative might be wrong. Does he feel gluten intolerance and celiacs are not always found by the blood tests? Does he write about that somewhere on his site? Would really like to know more about his views.