Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

In tears....:(

Laurel F
 Share

Recommended Posts

Laurel F Rookie
Laurel F
Posted

In my saga to get diagnosed, I had an IgA blood test (I had been eating gluten for a few months). It came back negative. I managed to see the dermatologist yesterday (woo hoo!) who said my rash is "consistent with DH" but he would not say it was DH. He did two punch biopsies which will be ready in about a week.

My primary care sent me an email saying that because the IgA is negative, I do not have celiac disease. So hoping the biopsy shows something.

Why will no one give me a diagnosis??? I'm going out of my mind. I do not want to go gluten free unless I have to because I already have several restrictions on what I can cook for my son with multiple food allergies, and wheat is a big part of his diet (he is allergic to peanuts, tree nuts, soy, eggs and sesame).

I'm at my wits end. :( 

Thanks for being so supportive everyone!

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

Celiac.com Sponsor (A8-M):


tessa25 Rising Star
tessa25
Posted

It sounds like you were not given the full celiac panel.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

 

 

GFinDC Veteran
GFinDC
Posted
(edited)

Some people with DH do lousy on the blood antibody tests.  They hoard all their gliaden antibodies in their skin instead of their bloodstream.  So they may test negative on blood antibodies but still have plenty of antibodies in the skin.  Sometimes they even flunk the endoscopy tests for the same reason.

Edited by GFinDC
cyclinglady Grand Master
cyclinglady
Posted
(edited)

Oh no!  One celiac test?  Only one was given?  The TTG IgA, I assume or you just got the Immunoglobulin A (IGA) test?  You should insist on the complete celiac panel.  You should also know that  some people with DH do not test positive on any of the celiac blood tests.  If your skin biopsies are negative, make sure they biopsy was taken correctly — not on the rash, but adjacent.  This mistake is make ALL THE TIME by dermatologists.  

Because of what you disclosed in another post, you should consider asking a Gastroenterologist and not your GP (who seems to know little about celiac disease and testing) why you had small intestinal damage (per initial biopsies) went gluten free and later a second biopsy revealed a healed small intestine, yet you were not given a celiac diagnosis.   Later, it seems you started consuming gluten again or were getting traces of gluten into your diet, and now may have developed or worsened your DH.

Quote:

“Hi, I have been trying to get a celiac diagnosis for awhile now. I had an endoscopy years ago that showed flatted villi but the biopsy said "possible sprue or possible duodonitis." I went g.f. and had another test a few years later. The villi were normal but I had what I thought was a d.h. rash. The dermatologist said it did not look like d.h. and said it was just eczema. 

To test myself, I started eating gluten again. I have occasional bowel issues but not like I had years ago.”

Now my legs look like I have d.h. again.”

You can go gluten free and safely prepare gluten in your house.  I did this for 12 years when my hubby was gluten free and before I was shockingly diagnosed.  You just can not ingest gluten.  The only thing you need to avoid is flour because flour has been documented to stay in the air or fall on surfaces for up to 24 hours (one reason not to have a coffee in a bakery or donut shop — sit outside!)  You can cook pasta, make sandwiches, open a box of cookies....whatever!  Just do not use loose flour.  

If he needs a birthday cake, have a friend bake it at their house.  Or he may love a gluten-free cake.  Soon I will be baking my kid a gluten-free Chocolate Mayonnaise Cake for her birthday and she is not celiac!  She actually prefers it to a gluten-containing bakery cake!  

There are plenty of alternate grains besides wheat, barley and rye for your son.  Think outside the box.  

I have said this before you should get your son tested for celiac disease.  I have allergies and I never had a positive for wheat.  Wheat allergies and celiac disease are separate issues.  He may very well have celiac disease.  Why?  Because his mom had a positive intestinal biopsy and went gluten free and then had a repeat intestinal biopsy and healed.  I am not a doctor, but that is pretty damning evidence. 

Maybe you need to consult with an attorney who specializes in malpractice.  You appear to have been put through a diagnostic nightmare.  

I hope this helps.  Mothers need to take care of themselves first, so that they can help their children.  It is like the oxygen masks on an airplane.  Adults are instructed to put their mask on first before assisting others (e.g. children).

 

 

 

 

Edited by cyclinglady
Laurel F Rookie
Laurel F
Posted
  • Author

My hell continues. Punch biopsy showed Excoriation with inflammatory scale and adjacent mild superficial perivascular lymphocytic inflammatory infiltrate consistent with mild hypersensitivity reaction or eczematous process.

Of course, both dermatologist and primary care are out of office. The secretary at dermatology called and said that the dr left a message saying that the test did not show DH but perhaps it was done too late and we can discuss next steps when he gets back in 3 weeks! What the hell do I do for 3 weeks? Why is this so darn hard?

Thanks for all your support, as I itch and bleed and itch and bleed...

Laurel

cyclinglady Grand Master
cyclinglady
Posted
(edited)

I am so sorry.  ?

Edited by cyclinglady
Posterboy Mentor
Posterboy
Posted
On 2/22/2019 at 2:16 PM, Laurel F said:

In my saga to get diagnosed, I had an IgA blood test (I had been eating gluten for a few months). It came back negative. I managed to see the dermatologist yesterday (woo hoo!) who said my rash is "consistent with DH" but he would not say it was DH. He did two punch biopsies which will be ready in about a week.

My primary care sent me an email saying that because the IgA is negative, I do not have celiac disease. So hoping the biopsy shows something.

Why will no one give me a diagnosis??? I'm going out of my mind. I do not want to go gluten free unless I have to because I already have several restrictions on what I can cook for my son with multiple food allergies, and wheat is a big part of his diet (he is allergic to peanuts, tree nuts, soy, eggs and sesame).

I'm at my wits end. :( 

Thanks for being so supportive everyone!

Laurel,

Your wits end comment could describe many people with DH.

There is actually in the DH forum a thread by that name.

Here is some threads that might help you.

Also check out this old research on DH before it was known to be associated with Celiac disease it might help you.

https://core.ac.uk/download/pdf/82674034.pdf

If it is the superficial inflammatory dermatoses the doctor's think it is then see the research to inform you more about their diagnosis from the BMJ entitled My approach to superficial inflammatory dermatoses

https://jcp.bmj.com/content/58/12/1233

I hope this is helpful but it is not medical advice.

Good luck on your continued journey.

Posterboy,

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

Celiac.com Sponsor (A8-M):


jean9v Rookie
jean9v
Posted
On 2/22/2019 at 3:16 PM, Laurel F said:

In my saga to get diagnosed, I had an IgA blood test (I had been eating gluten for a few months). It came back negative. I managed to see the dermatologist yesterday (woo hoo!) who said my rash is "consistent with DH" but he would not say it was DH. He did two punch biopsies which will be ready in about a week.

My primary care sent me an email saying that because the IgA is negative, I do not have celiac disease. So hoping the biopsy shows something.

Why will no one give me a diagnosis??? I'm going out of my mind. I do not want to go gluten free unless I have to because I already have several restrictions on what I can cook for my son with multiple food allergies, and wheat is a big part of his diet (he is allergic to peanuts, tree nuts, soy, eggs and sesame).

I'm at my wits end. :( 

Thanks for being so supportive everyone!

 

jean9v Rookie
jean9v
Posted

Find out if your IgA numbers are where they should be... If they are very low... you will have a false negative to Celiac.  The biopsy will probably not show anything... that is what happened to me... go on the gluten-free diet for 2 weeks... I am guessing that the itch to your rash will stop within in 5 days... mine did in 3.... if you have any stomach/digestive issues... you will also have less pain by the end of the 12 days... stop the dairy too, if you can for those 2 weeks... you could also have issues breaking down the milk protein, as well... a bit lactose intolerant .. if so, I had lactose issues, but, once I started to heal from the gluten-free diet within about 6-8 months I could do dairy again... If you are someone who also has sinus issues, can't kick a head cold very quickly, then you have IgA deficiency... which your doctor needs to know about.  Please google more about it.  If you googel IgA Deficiency and Celiac you will learn a great deal on how clueless some doctors are with this.  

Laurel F Rookie
Laurel F
Posted
  • Author

Just found these notes that I wrote back in 2009. Ten years ago had same rash that got better off gluten. I should share with my primary care and dermatologist. Looks like I got the same run around then. BTW, I wrote that the rash got better when I stopped gluten.

IMG_4326.webp

jean9v Rookie
jean9v
Posted

Well... if it walks like a duck... I say you have Celiac or you are very sensitive... go on the gluten-free diet... your Vitamin D was low... because you are not absorbing nutrients from your diet... take a very good multi-vitamin breakfast and dinner to help build up your levels... and eczema is a label for any skin condition, that they have know idea of what it is... the gluten-free Diet is not that hard... it is a life saver...and now there are so many good gluten-free items... Costco has Pizza in a 3 pak that is great... Aldi and Thyme Market have so many items as well.. at really great prices.   Try it for 2 weeks... start on Wednesday... gluten-free for Lent.  :)

 

Ennis-TX Grand Master
Ennis-TX
Posted
23 minutes ago, Laurel F said:

Just found these notes that I wrote back in 2009. Ten years ago had same rash that got better off gluten. I should share with my primary care and dermatologist. Looks like I got the same run around then. BTW, I wrote that the rash got better when I stopped gluten.

IMG_4326.webp

Looks like a positive celiac diagnosis if I read right. Those with DH have less damage to the intestines and lower IgA due to the antibodies in the skin. BUT HERE it is so bad you still have slightly elevated IgA and early sprue damage from celiac at. Celiac Sprue. IE they diagnosed you back in 09

Check the newbie 101 section in coping, drop all dairy and anything with added iodine as it will make it DH worse for many. FOR now stick to a whole foods diet, I have a list of treats and gluten-free alternatives that I update quarterly. 
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/123298-gluten-free-food-alternative-list-2019-q1/

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,367
    • Most Online (within 30 mins)
      7,748
    Brianman
    Newest Member
    Brianman
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...