Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

jma810

Need Help With Diagnosis

Rate this topic

Recommended Posts

I need help figuring out what to do with my 14 year old son. I just found out that I have celiac disease from an EntroLab and saliva test. I had symptoms for over ten years before diagnosis finally. My concern now is my son. All his life he has had constant breakout of this rash on his arms, legs and/or feet. It starts off as patches of blisters. They eventually pop and get infected from scratching. Then they dry up and get leathery. I have taken him to doctors all his life and they just say that it is a bacteria or an allergy. I would usually get them to go away by cleaning up his diet and giving him lots of vitamins. They eventually come back when he has been very busy and active and his system is worn down from so much activity and junk food eating. So I knew this was an immune response because they would go away after mega dosages of vitamins and a clean diet. By clean diet, I would just not let him have junk food and give him more protein and good carbs.

Well he just had another bought of it on his feet and ankles. I did not know about DH until my diagnosis. I took him to a GI to have the blisters tested and she didn't even want to look at them because she said that they are not in the classic location. She did eventually look with some pleading and agreed that they looked like DH. She ran a tissue transglutaminase antibody IGA test and it was negative. Now what? Is this conclusive? Not sure what I should do now? Could I be wrong and maybe it is something else? Incidentally his white blood cell count it below normal as is mine. Thank you for your thoughts. Not sure if I should keep pursuing it of accept the results as is.

Share this post


Link to post
Share on other sites

Welcome to the boards.

First let me say that Enterolab cannot dx Celiac. It can only show gluten intolerance and if you opted for the gene testing it can show if you have the recognized Celiac genes. Having the genes does not mean you have Celiac disease. It just means you have the potential. Also, saliva does not dx Celiac either. It can only show gluten sensitivity.

There is a difference between the two. If you are still eating gluten, you should go to a doctor and ask for a full Celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Then based on the results of these, you may need a biopsy. This is how you can be dx Celiac. There is no other way for an official dx. Anything else might just be an intolerance.

No that test was not sufficient for your son. A dermatologist needs to biopsy the healthy skin right next to the outbreak (not the lesions). This is how DH/Celiac is dx. And he should have a full blood panel (above) as well.

I hope this helps.

Share this post


Link to post
Share on other sites

Thank you, ShayFL.

I did not know that Entrolab did not dx celiac disease. My dr told me I was based on that test. I do have the gene also. I never had the blood tests done, but have now been gluten-free for 3 months. The Entrolab showed that I have severe levels of malabsorption. So I have been afraid to dare eat gluten again. I also showed an immune response to dairy and soy. I was dx two years ago with hashimotos. It has been a long journey and now this too. :(

Does he had to have an active rash to get the biopsy? They are just healing up now. I hope I can get him before they go away completely. Though...they will be back again.

Thanks again!!! BTW, I am in Tampa too. Go Rays !!

Share this post


Link to post
Share on other sites

Another Tampa person....cool. :)

Yes there has to be an active outbreak of DH to get a proper biopsy.

Here is the thing with Enterolab. Most doctors do not recognize it as a valid testing tool. Dr. Fine has not published his work for peer review, therefore, most regular M.D.s will not even look at it. They believe an official dx is only possible with the full Celiac blood panel and a biopsy. Celiac genetic testing is not even necessary for most doctors.

If you have the genes, showed signs of malapsorption and gluten intolerance PLUS a positive response to the diet. You have your answer. If your doctor dx Celiac, then go with that and do not worry about what any future doctors might say to convince you otherwise. And do not be concerned with people on this board who will say you do not have Celiac because you do not have an official dx via blood and biopsy.

There are many hair splitters in here. :blink:

Just stick with what you are doing which is a gluten-free diet. Know it is for life. And keep healing!

As for your Son, he will need an active outbreak to get the biopsy. The good news is that would be ALL he needed if it comes up POS. I know you dont want to feed him gluten, but if you could get that rash to come back and get over to the Dermo ASAP you could get your answer and get on with healing.

Share this post


Link to post
Share on other sites

If you don't want to feed gluten to create the rash one other less invasive way to get the rash to come up for biopsy would be to coat the inside of his arm, an area that could be covered by a small bandaid, with some iodine. This needs to be actually iodine and you should be able to find it at a pharmacy. Topical application of iodine will bring up a DH rash in those that have it, it was an oldtime way of diagnosing. If a rash forms you could then head to the derm. Do keep in mind that DH is not the only skin problem associated with celiac but it is the only one that is a conclusive diagnosis.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • May 29, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • June 01, 2019 Until June 02, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
    • July 07, 2019 Until August 03, 2019
      0  
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.


×
×
  • Create New...