Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Self Diagnosed...looking For Help

cindylou7

Recommended Posts

cindylou7 Apprentice
cindylou7
Posted

I recently had bloodwork that came back within normal range although the Dr. said the markers did show something??? I was only back on gluten for approx 3 weeks before testing though. Previous problems...dx nervous stomach in teens with sensitivity to milk, dx with IBS in my twenties, gallbladder disease with removal in 30's, previous CBC's show chronic anemia, leukocytopenia. Hysterectomy last year due to bloat and distention identified cysts and endomyosis. But bloat returned. Also dx with chronic shingles outbreaks but now I think it may be misdiagnosed DH. Bloat, diarrhea, skin rash disappear when gluten-free.

I have two big questions...

1) Should I keep fighting for a diagnosis?

2) Can DH be diagnosed while gluten-free or will I have to eat it again?

PS. My apologies for attempting to post on a seperate thread...new to this!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


beachbirdie Contributor
beachbirdie
Posted

I recently had bloodwork that came back within normal range although the Dr. said the markers did show something??? I was only back on gluten for approx 3 weeks before testing though. Previous problems...dx nervous stomach in teens with sensitivity to milk, dx with IBS in my twenties, gallbladder disease with removal in 30's, previous CBC's show chronic anemia, leukocytopenia. Hysterectomy last year due to bloat and distention identified cysts and endomyosis. But bloat returned. Also dx with chronic shingles outbreaks but now I think it may be misdiagnosed DH. Bloat, diarrhea, skin rash disappear when gluten-free.

I have two big questions...

1) Should I keep fighting for a diagnosis?

2) Can DH be diagnosed while gluten-free or will I have to eat it again?

PS. My apologies for attempting to post on a seperate thread...new to this!

Sorry to say, to get accurate results testing-wise you need to be eating gluten for a while. As for DH, I think the antibodies linger for a while after you stop eating gluten if it truly is DH...I've heard two or three weeks but I'm not sure on that one. And it needs to be done by a doc who knows what they're doing, some docs mistakenly biopsy the blisters but the biopsy needs to be done in the healthy skin right next to the blisters.

You definitely should get copies of your labs and post them. That's a good start. If you had not been eating gluten very long, it could skew the tests. How long were you OFF gluten at the time of testing?

You definitely have stuff going on that could be gluten related, and if you got better stopping gluten that tells you a lot.

Were any of your tests allergy tests?

If you don't need an "official" diagnosis, you don't need a doctor's permission to eat a gluten-free diet.

mushroom Proficient
mushroom
Posted

Hi and welcome, cindylou. No apologies for starting a separate thread - it is the preferred way :)

Three weeks back on gluten is not long enough for a valid diagnosis. But get a copy of the results anyway and see what they say (and tell us, with the reference ranges). You symptoms sound spot on. How long had you been off gluten?

DH can only be diagnosed by biopsy if you have an active lesion, but sometimes it doesn't take much to activate one. And then the biopsy needs to be taken adjacent to the lesion, not on it.

squirmingitch Veteran
squirmingitch
Posted

And you also need to be consuming gluten even for the dh biopsy. And there's a 40% (I think 40% -- or close to it) false neg. on the dh biopsy even when performed correctly.

Post your results like shroomie says.

And I echo beachbirdie --- you don't need anyone's permission to eat gluten free.

cindylou7 Apprentice
cindylou7
Posted
  • Author

Thanks for your suggestions. I hate the fact that there is never an easy definitive answer. I also hate that people seem to accept your "strange diet" more readily with a dx even though I can identify hidden gluten in almost anything with a visible physical reaction. My stomach looks about 6 mths pregnant....not fun!

beachbirdie-I was gluten-free for the most part for about 6-8 mths before the test and I consumed gluten for 3 weeks prior to the test. I feel confident that I definitely have a problem with gluten, so I will follow the diet. And no, I havent had any allergy testing.

Mushroom & squirmingitch-where would i post the results? On this thread or a new one...

mushroom Proficient
mushroom
Posted

Mushroom & squirmingitch-where would i post the results? On this thread or a new one...

Right here would be just fine -- keep the story in one book :)

cindylou7 Apprentice
cindylou7
Posted
  • Author

Okay these are the results...

IgA quant ® 124 mg/dL

gliadin IgA 1 unit

gliadin IgG 2 unit

t IgA <2 U/mL

t IgG <2 U/mL

Endomysial AB neg

I dont understand what the Dr was talking about when he said that one of the tests showed "something" that could be an indicator. There were no range indicators...

other results (I dont even know what these tests are for or what they represent!)

gASCA 23

ACCA 59

ALCA 1

AMCA 26

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


beachbirdie Contributor
beachbirdie
Posted

Okay these are the results...

IgA quant ® 124 mg/dL

gliadin IgA 1 unit

gliadin IgG 2 unit

t IgA <2 U/mL

t IgG <2 U/mL

Endomysial AB neg

I dont understand what the Dr was talking about when he said that one of the tests showed "something" that could be an indicator. There were no range indicators...

other results (I dont even know what these tests are for or what they represent!)

gASCA 23

ACCA 59

ALCA 1

AMCA 26

Well, without the ranges, it is hard to tell. The second set of numbers, with the unrecognizable names, are tests for antibodies found in Crohn's and other inflammatory bowel diseases. Maybe that's what your doctor meant when he said he saw "something".

Open Original Shared Link

Perhaps it would be possible for you to contact your doctor's office and find out what the reference ranges are for the tests.

Your negative celiac tests could be that way because you were not eating enough gluten. Negative tests don't mean you don't have the disease, and if you have a strong positive response to the diet, it's a good indicator you shouldn't eat gluten!

The only way to try getting your blood to test positive is to eat lots of gluten for several months. Even then, some people still test negative. Some have negative biopsies.

This condition is really, really hard to get diagnosed, partly because the testing is not perfect, partly because it mimics so many other conditions.

cindylou7 Apprentice
cindylou7
Posted
  • Author

Well, without the ranges, it is hard to tell. The second set of numbers, with the unrecognizable names, are tests for antibodies found in Crohn's and other inflammatory bowel diseases. Maybe that's what your doctor meant when he said he saw "something".

Open Original Shared Link

Perhaps it would be possible for you to contact your doctor's office and find out what the reference ranges are for the tests.

Your negative celiac tests could be that way because you were not eating enough gluten. Negative tests don't mean you don't have the disease, and if you have a strong positive response to the diet, it's a good indicator you shouldn't eat gluten!

The only way to try getting your blood to test positive is to eat lots of gluten for several months. Even then, some people still test negative. Some have negative biopsies.

This condition is really, really hard to get diagnosed, partly because the testing is not perfect, partly because it mimics so many other conditions.

Thank you so much! I think, know that I react to gluten...and it seems that this is such a difficult problem to diagnose that I will just continue to live gluten free. If I happen to have an outbreak of DH I will head to the dermatologist immediately and see if he thinks that he can make a diagnosis. If not...I will continue to choose gluten-free. I am so frustrated at the problems related to ingesting gluten that it's just not worth it.

I have friends and family who have witnessed the "effects" of gluten...I know that I am not crazy or a hypochondriac...but sometimes it feels like it! And it is sooooo aggravating to ask people if something is gluten-free and have them look at you like you are faking a disease

MitziG Enthusiast
MitziG
Posted

You didn't post the normal ranges, but I am guessing what he saw is IGA deficiency. Most of the IGA labs I have seen have above 200 as normal- your reading of 124 would be low- IF THOSE ARE THE RANGES.

IGA deficiency is a common "red flag" for celiac. It also would render your other IGA tests invalid.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    2. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    3. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    5. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    Moooey
    Newest Member
    Moooey
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.