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Doc Tomorrow - Which Tests To Request?

Chirpy

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Chirpy Newbie
Chirpy
Posted

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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ravenwoodglass Mentor
ravenwoodglass
Posted

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 Newbie
Chirpy
Posted
  • Author

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 Proficient
mushroom
Posted

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 Collaborator
Skylark
Posted

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 Newbie
Chirpy
Posted
  • Author

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 Newbie
Chirpy
Posted
  • Author

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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Chirpy Newbie
Chirpy
Posted
  • Author

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 Mentor
ravenwoodglass
Posted

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 Newbie
Chirpy
Posted
  • Author

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 Newbie
Chirpy
Posted
  • Author

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 Proficient
mushroom
Posted

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 Mentor
ravenwoodglass
Posted

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 Newbie
Chirpy
Posted
  • Author

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 Newbie
Chirpy
Posted
  • Author

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.

psawyer Proficient
psawyer
Posted

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 Newbie
Chirpy
Posted
  • Author

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 Newbie
RoseTapper
Posted

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 Proficient
mushroom
Posted

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 Newbie
Chirpy
Posted
  • Author

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 Proficient
mushroom
Posted

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 :o

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 Newbie
Chirpy
Posted
  • Author

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 Newbie
Chirpy
Posted
  • Author

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 Proficient
mushroom
Posted

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 :D . 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 :lol:

Chirpy Newbie
Chirpy
Posted
  • Author

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.

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      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
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