Frustrated with doctors

[Lindsey1978]

Hi everyone, 

just wanting your opinion on whether you think my 9 yr old son could be coeliac. He started vomiting about 5 weeks ago and complaining of a sore tummy. First doctor said constipation and told him to drink some water. 2nd doctor ordered bloods and coeliac screen. 

Results

CLINICAL NOTES: 

 

  IMMUNOLOGY                                       SPECIMEN: SERUM

    COELIAC DISEASE ANTIBODIES 

                                                   REFERENCE RANGES

                                              Normal   Low     Mod.  Strong

Deamidated Gliadin IgG       *      24 CU    (< 20) (20-50) (51-80) (> 80)

Tissue Transglutaminase IgA  *      24 CU    (< 20) (20-50) (51-80) (> 80)

 

 

 

INTERPRETATION

Low level of tissue transglutaminase antibodies of uncertain clinical

significance.

RECOMMENDATIONS

If clinical suspicion remains high, tests on a fresh blood sample for HLA

DQ2/DQ8 are recommended. Negative DQ2/DQ8 virtually excludes coeliac

disease. If DQ2/DQ8 positive, small bowel biopsy may be required.

 

They are calling this low positive. We had tested genes and while waiting for results my son got very sick and was admitted to hospital for an inflamed large bowel which they then attributed to him having clampobacyter. They then said all his symptoms and possibly the coeliac screen results were because of this bug even though his symptoms started 3 1/2 weeks before he got sick with the bug. They sent us home and and said he'd get better. 2 days later I drove him to our closest city to another hospital as he couldn't stop throwing up and they admitted him again. They finally agreed after discussions with 3 c different departments and infectious diseases that the bug was not the cause of his existing symptoms but are still reluctant to look at coeliac even though his gene test came back positive for 2 genes. They have tentatively diagnosed him with gastro paresis as he is vomiting up to 11 times a day. He is pale, has dark circles under his eyes and complains of constant tummy pain that increases at times during g the day. I guess I'm just wondering if he fits the profile for coeliac or at this point in just hoping it is so I know what's wrong and can do something g to fix it instead of just watch him get sicker. 

Thanks so much for any response. xx

[Feeneyja]

Oh wow. Positive is positive. Especially with two blood tests and HLA gene status. I don't think you can have an elevated tTG in the absence of celiac disease. It is very specific. You would need a small bowel biopsy to confirm damage, but sometimes those don't come back showing damage because the damage is just not extensive enough.

I would find a doctor knowledgeable about celiac disease.  Unfortunately, some in the medical community don't consider the early stages of the disease as have celiac and they wait until you have high blood makers and detectable damage to diagnose.   If you can get him off gluten befor then, all the better.  Dr. Marsh, who developed the standard for diagnosing celiac disease by intestinal biopsy has recently criticized the medical community for just that and argues that celiac disease begins well before damage to the intestines and this should be recognized.

Also, might want to look at whether or not he is positive for small intestine bacterial overgrowth (SIBO) which can have the GI symptoms you see and is common with celiac disease. That is diagnosed  with a breath test and treated with antibiotics (either traditional or herbal) plus diet modification (elimination of easily fermentable carbohydrates - ie no grains, no starchy veggies, no added sugar).  There is a lot of info about SIBO on line. 

Bedt of luck to you and don't give up. Unfortunately we need to really be advocates for ourselves in our current medical system. 

[ironictruth]

You absolutely CAN see an elevated TTG absent celiac disease as well as false positive DGP. So it is not wise to jump to conclusions based on a positive.

But he certainly should be worked up for celiac.

The tests you reference initially are antibody tests. Not gene tests. Did the HLA gene tests come back yet? 

It would also be good to have them run an EMA test. 

If the HLA test is positive they should move to biopsy. 

Do NOT remove gluten from his diet before then but you could minimize it to a half a slice of bread per day. 

If you get frustrated with your local GI docs you could see a specialist. There are several celiac specialty centers in the US. What state do you live in? 

My heart breaks for you and your little one. 

[Victoria5289]

On 5/15/2017 at 7:31 AM, Lindsey1978 said:

Hi everyone, 

just wanting your opinion on whether you think my 9 yr old son could be coeliac. He started vomiting about 5 weeks ago and complaining of a sore tummy. First doctor said constipation and told him to drink some water. 2nd doctor ordered bloods and coeliac screen. 

Results

CLINICAL NOTES: 

 

  IMMUNOLOGY                                       SPECIMEN: SERUM

    COELIAC DISEASE ANTIBODIES 

                                                   REFERENCE RANGES

                                              Normal   Low     Mod.  Strong

Deamidated Gliadin IgG       *      24 CU    (< 20) (20-50) (51-80) (> 80)

Tissue Transglutaminase IgA  *      24 CU    (< 20) (20-50) (51-80) (> 80)

 

 

 

INTERPRETATION

Low level of tissue transglutaminase antibodies of uncertain clinical

significance.

RECOMMENDATIONS

If clinical suspicion remains high, tests on a fresh blood sample for HLA

DQ2/DQ8 are recommended. Negative DQ2/DQ8 virtually excludes coeliac

disease. If DQ2/DQ8 positive, small bowel biopsy may be required.

 

They are calling this low positive. We had tested genes and while waiting for results my son got very sick and was admitted to hospital for an inflamed large bowel which they then attributed to him having clampobacyter. They then said all his symptoms and possibly the coeliac screen results were because of this bug even though his symptoms started 3 1/2 weeks before he got sick with the bug. They sent us home and and said he'd get better. 2 days later I drove him to our closest city to another hospital as he couldn't stop throwing up and they admitted him again. They finally agreed after discussions with 3 c different departments and infectious diseases that the bug was not the cause of his existing symptoms but are still reluctant to look at coeliac even though his gene test came back positive for 2 genes. They have tentatively diagnosed him with gastro paresis as he is vomiting up to 11 times a day. He is pale, has dark circles under his eyes and complains of constant tummy pain that increases at times during g the day. I guess I'm just wondering if he fits the profile for coeliac or at this point in just hoping it is so I know what's wrong and can do something g to fix it instead of just watch him get sicker. 

Thanks so much for any response. xx

Pleading with you to go and check for a tumor