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):

Question about testing for celiac

Jules22

Recommended Posts

Jules22 Apprentice
Jules22
Posted

I started a topic a couple of weeks ago about my type 1 daughter with a ttg iga result of greater than 100 being suspected of having celiac.  She saw the GI and has her biopsy scheduled for this coming Tuesday.  Seems like there is no doubt that it will show celiac but we will know soon.  I have started thinking about some of the symptoms that I have had and before my house goes gluten-free would like to test and make sure that I am not testing positive for celiac as well.  My symptoms are always tired--easy to write off--been really constipated and bloated which is a relatively new phenomenon for me.  Sometimes I get tingling in my legs/feet but that hasn't been too bothersome.

 

My primary care doctor tested my ttg igg which was 3 (<6 is negative) and ttg iga was <1 (<or =4 positive)  It doesn't look like he ran an immunoglobulin a test to verify that I am not immunoglobulin a deficient

 

He ran a cbc that showed that my MCH was high (34) indicating that I could be deficient in B12 or folic acid--I rarely drink so I don't think that could have skewed the results.  Could this be indicative of anything?  My doctor just said all my labs are good.  Do you think this rules out celiac for me or would you try to do further clarification/testing?

Thanks!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Yes, I would ask for the rest of the celiac panel (including the IgA deficiency test).  Discuss this with your child's GI.  He/She may be able to order for you.  Share the CBC results too with him/her.  I would want to know for sure before giving up gluten to support my child, but you need to determine what is best for you!  

Hatbox121 Apprentice
Hatbox121
Posted
9 hours ago, Jules22 said:

I started a topic a couple of weeks ago about my type 1 daughter with a ttg iga result of greater than 100 being suspected of having celiac.  She saw the GI and has her biopsy scheduled for this coming Tuesday.  Seems like there is no doubt that it will show celiac but we will know soon.  I have started thinking about some of the symptoms that I have had and before my house goes gluten-free would like to test and make sure that I am not testing positive for celiac as well.  My symptoms are always tired--easy to write off--been really constipated and bloated which is a relatively new phenomenon for me.  Sometimes 

He ran a cbc that showed that my MCH was high (34) indicating that I could be deficient in B12 or folic acid--I rarely drink so I don't think that could have skewed the results.  Could this be indicative of anything?  My doctor just said all my labs are good.  Do you think this rules out celiac for me or would you try to do further clarification/testing?

Thanks!

My MCH is always high too. Have some other oddities but doc always say labs are great as well. I dont think they ever really bother with the MCH. I'm also in testing and showed negative on the same ones you did. My IGA is fine though. As far as the other tests, maybe your girls GI can order or you could try your primary. 

Jules22 Apprentice
Jules22
Posted
  • Author

It's so frustrating how they don't order all or the right tests and then if something comes back not right--just ignore it.  With my daughter I knew something was off for some time but her blood tests -of course it was only a ttg iga and immunoglobulin a that were run-came back negative.  But in looking at previous blood tests-she had a cbc run about a year ago that showed that her MCV was high and there was no mention of it.  Makes me wonder if that along with a deficiency in her vitamin D levels can be attributed to celiac. 

 

On a side note--she has been experiencing lots of leg pain-to the point where she is sometimes in tears because they hurt so much!  She had her endocrinologist appointment yesterday and mentioned that and he didn't think that this could be attributed to the celiac.  Is that true?  As I stated before she is having the biopsy this Tuesday but I think she is hoping that this is a symptom of the celiac so that it will resolve going gluten-free.  Any thoughts?

Ennis-TX Grand Master
Ennis-TX
Posted
4 minutes ago, Jules22 said:

It's so frustrating how they don't order all or the right tests and then if something comes back not right--just ignore it.  With my daughter I knew something was off for some time but her blood tests -of course it was only a ttg iga and immunoglobulin a that were run-came back negative.  But in looking at previous blood tests-she had a cbc run about a year ago that showed that her MCV was high and there was no mention of it.  Makes me wonder if that along with a deficiency in her vitamin D levels can be attributed to celiac. 

 

On a side note--she has been experiencing lots of leg pain-to the point where she is sometimes in tears because they hurt so much!  She had her endocrinologist appointment yesterday and mentioned that and he didn't think that this could be attributed to the celiac.  Is that true?  As I stated before she is having the biopsy this Tuesday but I think she is hoping that this is a symptom of the celiac so that it will resolve going gluten-free.  Any thoughts?

Leg pain can be a symptoms of celiac or NCGS. Cause can also be from a deficiency brought on from different causes including celiac. How are her magnesium levels? And B-Vitamin Levels?

Bit of a joke, doctors call their occupation a "Practice" seems they need more practice.

ravenwoodglass Mentor
ravenwoodglass
Posted
37 minutes ago, Jules22 said:

 

 

On a side note--she has been experiencing lots of leg pain-to the point where she is sometimes in tears because they hurt so much!  She had her endocrinologist appointment yesterday and mentioned that and he didn't think that this could be attributed to the celiac.  Is that true?  As I stated before she is having the biopsy this Tuesday but I think she is hoping that this is a symptom of the celiac so that it will resolve going gluten-free.  Any thoughts?

I had horrific leg pains when celiac first reared its ugly head in my childhood. My Mom used to try warm compresses but I don''t remember them helping. Don't know if they were from vitamin deficiencies or not but I had them off and on throughout childhood. I would get cramps in adulthood almost anywhere. My back was the worst. The cramping did resolve gluten free. Don't know if that will be the case for your daughter though. One last thought I know many places are having a very warm summer. Dehydration can also cause muscle cramps so if your dealing with a lot of heat make sure she is well hydrated.

I hope she is feeling much better soon. Do get a full panel done on yourself and all first degree relatives. Testing is advised even if folks don't seem to have symptoms.

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

I get muscle spasms and cramps too. When gluten issues flare it gets annoying. As other posters said magnesium and b vitamins help. Of course when so damaged you don't absorb it is a challenge. As Raven said I get unbelievable back pain / muscle fatigue. Upper  back between shoulder blades and lower back which refers the pain to my left hip. Had it 20 plus years. While gluten-free it improved dramatically flooded back with full force rage during my challenge. Huge set back I still am working on 10 months later.

Does your Dr allow an Epsom salt baths? I find them beyond helpful for aches/pains after a DC introduced me to them.

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

Celiac.com Sponsor (A8-M):


Jules22 Apprentice
Jules22
Posted
  • Author

Thanks raven and awol--I think she will feel much better hearing that these pains could be due to her celiac.  I don't know about the Epsom salts-never asked-so I definitely will.  I think further compounding it right now is that the doctor did not want her to take ibuprofen for 7 days before the procedure and not sure if Tylenol is allowed but she can't take it because it messes with the continuous glucose monitor that she wears.  Only 4 more days.

 

I will try to see if my primary can or will run a full celiac panel for me.  Left him a message asking why he didn't test my immunoglobulin a and whether we should be running the full panel.  I have encouraged my husband to test as well--he did just have a colonoscopy and endoscopy last fall--looking for other things but would they have been able to see celiac if there?  He has bad acid reflux and they were just doing the colonoscopy since he turned 50.  My other daughter-who has Hashimoto's-was genetically tested for celiac through Prometheus labs about 6 years ago due to our family history of autoimmune and she was having bad stomach issues--that came back negative.  So I think (hope) she's good?

 

Feeneyja Collaborator
Feeneyja
Posted

My daughter did not test positive for celiac (6 week gluten challenge after being gluten free for 2 months).  So she is technically NCGS. One of her worst symptoms is leg pain. It was a chronic problem when she was 7, to the point where she could no longer play soccer. At 8 we went gluten free because of GI issues and the leg pain went away. It came back with the gluten challenge and again went away when we went off gluten for good after testing. If she gets glutened, that is one of the tell-tale symptoms. She has had to use crutches because the pain is so bad.  And when glutened, the pain usually lasts about 3 days. 

ravenwoodglass Mentor
ravenwoodglass
Posted
26 minutes ago, Jules22 said:

 My other daughter-who has Hashimoto's-was genetically tested for celiac through Prometheus labs about 6 years ago due to our family history of autoimmune and she was having bad stomach issues--that came back negative.  So I think (hope) she's good?

 

If she was just tested for DQ2 or DQ8 then it isn't for sure that she will never develop celiac.  There are other genes that have been found to be associated but not all doctors are aware. The gene I have a double copy of, DQ9, is one example.  Here is one research article but more can be found for those interested. 

Evidence that HLA-DQ9 confers risk to celiac disease by presence of DQ9-restricted gluten-specific T cells

Open Original Shared Link

squirmingitch Veteran
squirmingitch
Posted

First degree relatives of celiacs should be tested every 2 years in the absence of symptoms & immediately if symptoms present since celiac can present at any age.

Celiac affects every cell in the body & inflammation is common. My inflammation began in my lower back and the bend of my leg (on the back side of the knees). It progressed to literally everywhere. You name it, back, neck, arms, legs, ankles, hips, wrists, fingers. Excruciating pain as well as swelling. So excruciating that opiates didn't even phase it. I just had to bear it. I would take ice packs & use them until the area was pure D numb. You're never supposed to leave ice on that long but if I hadn't then I would have shot myself. I can not begin to describe the intensity of the pain. The last year before diagnosis, I was sure that within a year, I would be confined to a wheelchair for the remainder of my life.

Now, 5.5 years gluten free, I can't tell you the last time I took a Tylenol or any other anti inflammatory. In fact, I'm not on any meds at all. Nothing.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,108
    • Most Online (within 30 mins)
      10,442
    MiaPiwo
    Newest Member
    MiaPiwo
    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

    • Wheatwacked
      Symptoms Dismissed

      By Wheatwacked · Posted

      Chronic fatigue in the producer was the inspiration for the episode but I feel it touches on anyone that suffers and is dismissed as psycosomatic. The patient expressed my feelings elequently.  In episode 2 the doctor explains the problem well. I stopped all commercial milk protein like skim milk added to processed foods and in a few days there was a definate improvement in my  gut, bowel movements, discomfort etc. Still drinking several glasses of Pasture Fed grass fed milk with no negative effects.   Specifically, for myself Clonidine is the only medication that lowers my BP and the doctor did not renew it, insisting that I continue Losartan.  I think that she thinks I am abusing Clonidine and the reason the Losartan doesn't work is because I am non-compliant.  Absolutely not. Surprisingly after a few days withdrawal from the Clonidine my fasting blood sugar has gotten under control.  Fasting blood sugar near normal instead of over 160.  Last few days its been below 100.  I still need Glimiperide.  Without the clonidine my pulse rate is around 100 bpm, with it around 60.   Prescription of angiotensin receptor blockers in celiac disease is associated with persistent symptoms and surrogate markers of malabsorption.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12323722/ Angiotensin receptor blocker-associated enteropathy (ARB-e) is an increasingly recognised clinical entity with symptoms and histological findings identical to coeliac disease (celiac disease). There is evidence to suggest immune-mediated mucosal injury in ARB-e with a high prevalence of DQ2/DQ8; however, as IgA anti-tissue transglutaminase (anti-TTG) is usually negative   https://onlinelibrary.wiley.com/doi/full/10.1002/ueg2.12117 NEW research [Nov 2024] presented at the American College of Gastroenterology (ACG) Annual Scientific Meeting suggests that angiotensin receptor blockers (ARBs), a class of drugs commonly used to manage hypertension, may be associated with poorer outcomes in patients with coeliac disease. Findings indicated that patients taking ARBs had a higher likelihood of experiencing persistent symptoms and markers of poor small bowel healing, such as anaemia and iron deficiency.  https://www.emjreviews.com/en-us/amj/gastroenterology/news/angiotensin-receptor-blockers-may-worsen-coeliac-disease-outcomes/
    • mermaidluver22
      Some inflammation in ileum with celiac?

      By mermaidluver22 · Posted

      @BarcinoHi! I am so sorry abt your son but also relieved to know I am not alone! My ttg iga is still mildly elevated but going down. Last time we checked I had some small erosions in my ileum but recently got an MRE that showed no inflammation. Calpro 70. We are still in limbo but we are taking a conservative approach as well. Please keep me updated about his situation and outcomes! I always love to hear others opinions/experiences especially ibd specialists. 
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • BelleDeJour
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By BelleDeJour · Posted

      Oh, thank you all so so much! I have found my people.   ❤️ I am so sorry that we have all suffered with this torturous itching and resulting sore skin. Sue, I can relate to what you wrote about the dark thoughts, I have had them, too. It's very tough and painful.  I have now had a 2 day straight run of only minor itching. I woke up this morning and did not want to get out of bed because it is the first time in months that I have felt comfortable and actually been able to appreciate the lovely feeling of the duvet on my skin, rather than just waking in pain and thinking about where I need to put cream on before I dress for work. If I can continue like this, then I think I could manage without medication but every time I say this, I then have a flare up. I plan to be very careful about what I eat over the weekend and it won't be easy as we are out with friends for dinner on Saturday (the pub do have very good gluten-free options, I checked of course!).  I really, REALLY appreciate your words so much and am so glad to have found this forum. I am going to read the articles kindly posted now, thank you Scott.
    • Scott Adams
      Turkey neck

      By Scott Adams · Posted

      I don’t know how common this is with celiac disease specifically, but significant inflammation, weight changes, aging, genetics, and skin elasticity can all play a role. It may be worth talking with both your doctor and a board-certified dermatologist or plastic surgeon to see what options are realistic, from skin-tightening treatments to surgical approaches, while also making sure there isn’t ongoing inflammation, thyroid imbalance, or nutritional deficiency contributing. You deserve support for both the physical and emotional side of this.
×
×
  • Create New...