Jump to content

  • 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):

Son Just Diagnosed. Do I Need To Test Too?

melikamaui

Recommended Posts

melikamaui Explorer
melikamaui
Posted

Hello everyone,

This is my first post. My 6 year old son was diagnosed with celiac disease today. Well, one year ago, and then again today. The short version of the story is that our new gastro doc didn't trust the lab that the old blood work was sent to and wanted to run new tests. Tests came back positive, just like the first round. I told him they would based on my son's incredible sensitivity to gluten. He gets SO sick when he is glutened that it's frightening. He turns green, can't move, vomits and has diarrhea at the same time. He just moans and cries but can't even hold his head up to vomit or get himself to the toilet. It's the saddest thing I've ever seen.

The doctor wants to test my husband, other son and myself for celiac disease too. We all pretty much know he got this from me. I went gluten-free 6 months ago and a myriad of symptoms cleared up for me. Here are just a few of them...

migraines - which I suffered from bi-weekly are now gone

seizures - which I have had since childhood - GONE

brain fog - gone

bloating, cramping and gassiness - gone

And the biggest thing of all is that I hadn't had a menstrual cycle in over 15 months for reasons that no one could explain. (I'm only in my late 30's) Suddenly I finally got a period!

The tests for celiac disease are expensive as you all know. What I'm wondering is, based on my history and the fact that all of these heretofore unknown symptoms have cleared up since going gluten-free, do I need to test? Would you if you were me or would you just assume you have celiac?

Thanks so much. I'm really happy to have found all of you.

Melika

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

Celiac.com Sponsor (A8-M):


Poppi Enthusiast
Poppi
Posted

I would assume.

I'm guessing that with your son being so sensitive and getting so ill that your home is gluten free anyway? What are the odds that you would be able to complete a 2-4 month gluten challenge while also making sure he doesn't get cross contaminated and having enough energy to do the things you need to do day in and day out?

melikamaui Explorer
melikamaui
Posted
  • Author

Good point! Yes, our home is 100% gluten-free and has been for over a year. I'm going to have my other son tested for certain, but it seems like a waste of money to test myself. It just seems too obvious.

Thanks,

Melika

Cara in Boston Enthusiast
Cara in Boston
Posted

If your other son has been eating gluten free as well, all the tests will come back negative anyway. You need to be eating a fair amount of gluten daily for 3-6 months for a chance at an accurate test (and even then, there could still be a false negative.)

Roda Rising Star
Roda
Posted

I understand from your post your son had positive blood work a year ago and was diagnosed celiac. He had repeat blood work recently and it was positive also. Are his numbers going down at all? Is there any chance gluten is sneaking in unknowingly?

melikamaui Explorer
melikamaui
Posted
  • Author

His serology came back fine. It was the genetics that came back saying "Extremely High". Couple that with his horrific reaction to gluten and the doctor put 2 and 2 together. I was actually proud that his serology came back negative, it shows that we have been doing fine on the gluten-free diet.

I understand from your post your son had positive blood work a year ago and was diagnosed celiac. He had repeat blood work recently and it was positive also. Are his numbers going down at all? Is there any chance gluten is sneaking in unknowingly?

Roda Rising Star
Roda
Posted

His serology came back fine. It was the genetics that came back saying "Extremely High". Couple that with his horrific reaction to gluten and the doctor put 2 and 2 together. I was actually proud that his serology came back negative, it shows that we have been doing fine on the gluten-free diet.

Keep up the good work. I'm curious to see what my youngest son's ttg is now. I'm due to get my blood work redone also. Since eliminating more stuff I'm hoping the Igg antigliadin has went down. All the others were fine with just that one still being elevated last Aug.

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

Celiac.com Sponsor (A8-M):


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. Jmartes71
      - Jmartes71 commented on Scott Adams's article in Summer 2026 Issue
      5

      Court Ruling Raises Big Questions About "Gluten-Free" Food Safety in Retirement Communities (+Video)

      That's one of my biggest fears because the knowledge of how serious is completely laxed and we the patients suffer. Thank God this poor women got the results of winning that case.It should be mandated that any doctor, care facility and every ER know exactly what celiac is.NOT just a food consumption allergy as downplayed. Its not a choice its medically necessary...
    2. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      6

      Skin issues

      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, an...
    3. Scott Adams
      - Scott Adams replied to N Young's topic in Doctors
      1

      Frustrated with Providers

      You are not being unreasonable. A negative celiac blood test after 25 years gluten-free does not rule out celiac disease, because the antibodies usually fall once gluten is removed. It may simply show that your gluten-free diet is working. I would ask the doctor to add a clear note to your chart stating that the test was done while you were strictly gluten...
    4. Scott Adams
      - Scott Adams replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Iron loss and potential celiac.

      These articles may be helpful:
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      6

      Skin issues

      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph, by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,116
    • Most Online (within 30 mins)
      10,442
    DiDi53
    Newest Member
    DiDi53
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Skin issues

      By Scott Adams · Posted

      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
    • Scott Adams
      Frustrated with Providers

      By Scott Adams · Posted

      You are not being unreasonable. A negative celiac blood test after 25 years gluten-free does not rule out celiac disease, because the antibodies usually fall once gluten is removed. It may simply show that your gluten-free diet is working. I would ask the doctor to add a clear note to your chart stating that the test was done while you were strictly gluten-free, that you have a long history of dermatitis herpetiformis and strong clinical response to the gluten-free diet, and that celiac disease remains your working diagnosis unless properly reassessed with a supervised gluten challenge, which you may not want or need at this stage. This should help prevent future confusion. It is understandable to feel frustrated, especially after decades of being dismissed, but this may be fixable with a calm conversation and a chart correction rather than changing doctors.
    • Scott Adams
      Iron loss and potential celiac.

      By Scott Adams · Posted

      These articles may be helpful:    
    • Jmartes71
      Skin issues

      By Jmartes71 · Posted

      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph,  by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some pills ! I made the mistake of saying Im waiting on Infectious disease. She asked how did I get referral and I said I did it online.The next day I checked the status and it was denied! I did get  a referral to the dermatology office i went to last year that over charged me and did a biopsy on me stating inconclusive! I went to another dermatologist and he stated I should see Infectious disease at place i put in referral. With that I contacted that dermatologist and waiting to see if he thinks dermatology or Infectious disease is the route.I do have appointment for dermatology next week.Until then i did purchase Zahler paraGuard advance intestinal  flora support  from Sprouts. Im also very alarmed that the fact celiac isn't addressed properly infact its downplayed. When I had my son tested for HLA-DQ2 and it came out positive because he is eating everything and he is extremely skinny but he isn't dealing with severe diagestive issues because thats all he knows NOW or yet because he is still young 21.I too didn't know any difference when i was that age because thats all we know.Life changes will get him in latter years im afraid because what im dealing with.That scares me.The specialist we went to was only about congestion he is getting.He is getting congestion because he is eating what he isn't supposed too! Zero talk about celiac and HLA-DQ2 positive. Only talk was he is congested because we live in the Valley! They wanted to do surgery! I did write again to our district leader considering when I did call, the guy stated he knew all about celiac. I really wanted to tell him NO YOU DON'T but held my tongue. For my skin sores the cream given didn't do anything because ive also had in past.Ive been putting liquid vitamin c on it and taking vitamins which is making a little difference just with the last few days of doing.
    • N Young
      Frustrated with Providers

      By N Young · Posted

      I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time.   Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten challenge. I went on an elimination diet and found relief on the Dermatitis within a month. I have no doubt that I am celiac and very sensitive now. Now my issue is that I changed physicians due to retirement and he performed a blood test and included a celiac test. I was very upset because I did not request the test and had not been eating gluten for 25 years. Of course the test was negative.  My question - Will this cause me any issues with health treatment if my records now have that I dont have celiac? I like this physician and I am appalled that he performed the test. (he told me his brother is also celiac).  I feel that we are still living in the dark ages. I dont want to cause problems because I rarely need health treatment since I live a fairly healthy lifestyle.  Since I am at this age and been through so much getting to this point am I being unreasonable for being upset? I am not expecting to see this physician for another 2 months.  Need to know if I can expect issues with future treatments. How can a physician not know about the gluten challenge this day and age?   
×
×
  • Create New...