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Question about testing for celiac

Jules22

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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!

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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.

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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.

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