Husbands Test Results

[bayba792]

So I posted a couple of weeks ago that my husband's test for celiac gene came back that he had one of them but they didn't tell us which one or anything else they just referred him to GI. My hubby has been gluten free since march of this year and told GI he did not want to go back on gluten because if he eats just a little bit he is bent over in pain and has diarrhea within several minutes. Anyways the GI understood and ran some other test well here are the results:

 

Deamidated Gliadin Peptide Antibody,

IgG (DGP IgG) 9.2 EU/ml + <4.9 EU/ml

Deamidated Gliadin Peptide Antibody,

IgA (DGP IgA) 15.0 EU/ml + <6.1 EU/ml

Anti-Human Tissue

Transglutaminase IgA (TTG IgA) 2.3 U/ml - <10.3 U/ml

Anti-Endomysial IgA IFA (EMA IgA) Negative Negative

Total Serum IgA

By Nephelometry (TOTAL IgA) 308 mg/dl <3 Yrs: 8-220 mg/dl

3-13 Yrs: 41-395 mg/dl

>13 Yrs to adult: 44-441 mg/dl

Celiac Risk Haplotype: DQ8(HLADQA1*03:DQB1*0302)AND OTHER NON-RISK

ALLELES.

Category # DQ Genotype Increased Risk Over General Population Relative Risk

------------------------------------------------------------------------------

3 DQ8 HETEROZYGOUS 2X MODERATE

------------------------------------------------------------------------------

 

When he spoke to the GI he said that my hubby has celiacs and should stay on a gluten free diet and he wants to see him every 6 months for blood work and bone scan. The reason for this long story is because in Feb of this year my son got severely sick and was hospitalized he has always complained about stomach pain is severely underweight and stopped growing 3 yrs ago. He is 9 years old and is the size of a five year old. His GI said that everything is negative and diagnosed him with function pain IBS and just prescribed him with pain pills! Is it safe for me to push them to run more test regarding celiacs on my son since my hubby was diagnosed?

[shadowicewolf]

Yes, do so. Celiac is a genetic disease.

 

It could be the reason why your son has those issues as well.

[GlutenStinks15]

Yes, definitely push for the tests. My niece was diagnosed a few months after me b/c I pushed her parents to get her tested.

[nvsmom]

Yep, I would push for testing too but I would also make him gluten-free even if the results are negative. My ten year old's growth slowed right down (his 8 year old brother is now taller) and he has some headaches and GI issues, so we suspected celiac disease but his results were negative. I knew gluten could still be an issue so he is gluten-free. He feels better and has grown some, but so has his brother.

[bayba792]

Yep, I would push for testing too but I would also make him gluten-free even if the results are negative. My ten year old's growth slowed right down (his 8 year old brother is now taller) and he has some headaches and GI issues, so we suspected celiac disease but his results were negative. I knew gluten could still be an issue so he is gluten-free. He feels better and has grown some, but so has his brother.

I did change him to a gluten free diet sadly two months before his endo and it came back negative so they just diagnosed him with the IBS. But I have my sons labs from when he was in the hospital and they told me all of them are normal but when I ordered the copy there are 7 red flags shown. Here are the test that came up with red flags if you could tell me if you see anything that may point to celiac.

 

ANA                        8 High range ,<7.5 IU/ml

Creat Crea             0.45 low range 0.90-1.30 mg/dL

ALK PHOS              116 High range 32-91 U/L

ALB                         4.8 High Range 3.0-4.5 g/dL

Lipase, Serum         18 Low range 22-51

Bun/Crea Ratio        31.1 High 12-20

Cal Osmolality          274 Low range 275-295

 

They said he had a celiac panel done are they were negative here are the results:

ASCA-IGG   <20.1

ASCA-IGM   <20.1

 

range

Less than 20.1 units ....negative

20.1-24.9 units.........equivocal

greater than 24.9 units.....positive

 

This celiac panel looks nothing like my husbands results so I am really confused about this. I ordered all of his records from the hospital, specialist, and primary. Any advice please.

 

Thank you

[nvsmom]

I think that ASCA test is for inflammation and is usually used for colitis or Crohns disease. To be honest, I've never seen that test mentioned on this board over the past year and I'm on here a lot (as the state of my house can attest   ). I know it can detect celiac disease but I have no idea how specific it is to celiac or even how sensitive it is.  The usual tests are the tTG's, DGP's, AGA's and the EMA IgA (DGP IgG being great for detecting celiac disease in kids). This report lists the usual tests and how good they are on pages 11-12: Open Original Shared Link

 

If he is gluten-free, these tests may not be accurate. Children's antibody levels tend to fall back down to normal faster than adults (from what I've seen). You could always try them.

 

The ANA can indicate that an autoimmune problem is going on, but about 20% of the healthy population can have false negatives. They are usually given in a ratio with 1:80 or 1:160 considered to be positive. celiac disease can cause a positive ANA I have heard.

 

ALK PHOS would be to check on the liver, which can take a beating in untreated celiacs. Open Original Shared Link  

 

Serum Lipase is often a pancreas test, another organ that celiac disease is hard on. Open Original Shared Link

 

The ALB, Bun/CREA, and osmolality could show dehydration. Open Original Shared Link, Open Original Shared Link

 

The doctor's didn't comment on any of these tests? Sheesh!   I think two tests would point towards celiac disease, and the rest could be a bit of dehydration (or a less likely kidney issue). I'm not an expert or medically trained though, these are just my thoughts based on exeprience and what I've learned.

 

Thyroid problems and low Human Growth hormone (or low IGF-1) can slow growth too. You might want that checked but with the other celiac symptoms (so called IBS), I would assume celiac disease first.  If you look into thyroid testing, request TSH (should be near a 1), Free T3 and T4 (should be in the upper 50-75% range of the lab's normal reference range), and TPO Ab.

[bayba792]

Thank you nvsmom you have really helped. I left a message with the specialist's nurse but she said the Dr will be out all week. I can't find the results but in the doctors notes it states that my son's TSH level was mildly elevated but the endo consult said it was not enough to diagnose him with hyperthyroidism and it was probably due to him being so underweight that his thyroid didn't know how to regulate the hormone. Also the dehydration makes since because in Feb my son had chronic diarrhea that was every 5 mins over 50 times a day and cried about abdominal pain so they gave him pain meds. Once he left the hospital he was in diapers again that the Dr had to put him on medical leave from school, so he has been home with me for the rest of the school year. I put him on a gluten free diet to see if that would help with the diarrhea the last week of March and his stomach pain went away, I no longer had to give him the pain meds but he would still get diarrhea but I learned about cross contamination so I eliminated gluten from our house completely out of desperation. Well his bowel movements decreased little by little and he went from 50+ times a day to a maximum of 5 times a day. I am just really frustrated with this whole situation. We have been battling this for over two years now, when I first noticed his weight loss. I was told that it was fault, it was a form of control on his part, and the final "failure to thrive" diagnosis and he will need a psyc eval for anorexia. He is looking so much better now that he has been off gluten for almost 3 months. He seems almost like himself, energetic and actually wants to play instead of sleep. There is one question I have after all this rambling He was always and I mean ALWAYS sick, he would have a fever every month and the urgent care would tell me he had a weak immune system. Since being gluten free he has not got a fever is this a normal symptom?

 

Thank you to everyone who responded to me. I am glad I found this forum where people are so willing to help!  <3<3<3

[nvsmom]

Be careful of that TSH test.  Doctors seem to think it is the holy grail and don't test the Free T4 and Free T3, which is the actual hormone level in the blood. Plus, those tests are set up so the normal range is for 95% of the population; now if the normal range is 0.5-3.5 that means 95% of people should fall into that range. The problem is that about 10% of all people have some sort of thyroid problem - that means that half of all people with thyroid problems are within normal range.

 

If your son's TSH was elevated, he should be tested again as well as have the Free t's done. And if it is still high, I think he should be considered for a trial of hormones to see if it helps.

 

A high TSH, which indicates hypothyroidism (not hyperthyroidism) will slow a body's whole metabolism down by as much as 15% (I believe). it can affect energy and growth. 

 

I had hypo symptoms for 15+ years and kept requesting the docs to test me every few years. They would run the TSH and it would be normal, or just above normal (from a 2.5 up to a 6.5) and they would tell me I was normal. I trusted the doctors and never asked to see lab results. i was sub-clinically hypo for half of my life. I wasn't deathly ill but my quality of life was affected.  My hypo symptoms are finally going now that my TSH is well below a 1.... just something to consider.  ... I'll get down  off my soap box now. 

 

Frequent illness is a symptom of a chronic illness like celiac disease. They cause a lot of inflammation and use up a lot of the body's resources which can leave a body vulnerable. I used to be sick a lot. Fevers a few times a year even as an adult.  I have been sick much less, and with less severity since going gluten-free.... Hopefully he'll continue to stay healthy.

 

I wanted to mention that about half of all celiacs are lactose intolerant until they are healed. if GI issues contine, you might want to try him off dairy for a few months.

 

take care.

[w8in4dave]

Wow!! I would def. put your son on Gluten free!! 

[bayba792]

Be careful of that TSH test.  Doctors seem to think it is the holy grail and don't test the Free T4 and Free T3, which is the actual hormone level in the blood. Plus, those tests are set up so the normal range is for 95% of the population; now if the normal range is 0.5-3.5 that means 95% of people should fall into that range. The problem is that about 10% of all people have some sort of thyroid problem - that means that half of all people with thyroid problems are within normal range.

 

If your son's TSH was elevated, he should be tested again as well as have the Free t's done. And if it is still high, I think he should be considered for a trial of hormones to see if it helps.

 

A high TSH, which indicates hypothyroidism (not hyperthyroidism) will slow a body's whole metabolism down by as much as 15% (I believe). it can affect energy and growth. 

 

I had hypo symptoms for 15+ years and kept requesting the docs to test me every few years. They would run the TSH and it would be normal, or just above normal (from a 2.5 up to a 6.5) and they would tell me I was normal. I trusted the doctors and never asked to see lab results. i was sub-clinically hypo for half of my life. I wasn't deathly ill but my quality of life was affected.  My hypo symptoms are finally going now that my TSH is well below a 1.... just something to consider.  ... I'll get down  off my soap box now. 

 

Frequent illness is a symptom of a chronic illness like celiac disease. They cause a lot of inflammation and use up a lot of the body's resources which can leave a body vulnerable. I used to be sick a lot. Fevers a few times a year even as an adult.  I have been sick much less, and with less severity since going gluten-free.... Hopefully he'll continue to stay healthy.

 

I wanted to mention that about half of all celiacs are lactose intolerant until they are healed. if GI issues contine, you might want to try him off dairy for a few months.

 

take care.

THANK YOU SO MUCH!!! 

[frieze]

I did change him to a gluten free diet sadly two months before his endo and it came back negative so they just diagnosed him with the IBS. But I have my sons labs from when he was in the hospital and they told me all of them are normal but when I ordered the copy there are 7 red flags shown. Here are the test that came up with red flags if you could tell me if you see anything that may point to celiac.

 

ANA                        8 High range ,<7.5 IU/ml

Creat Crea             0.45 low range 0.90-1.30 mg/dL

ALK PHOS              116 High range 32-91 U/L

ALB                         4.8 High Range 3.0-4.5 g/dL

Lipase, Serum         18 Low range 22-51

Bun/Crea Ratio        31.1 High 12-20

Cal Osmolality          274 Low range 275-295

 

They said he had a celiac panel done are they were negative here are the results:

ASCA-IGG   <20.1

ASCA-IGM   <20.1

 

range

Less than 20.1 units ....negative

20.1-24.9 units.........equivocal

greater than 24.9 units.....positive

 

This celiac panel looks nothing like my husbands results so I am really confused about this. I ordered all of his records from the hospital, specialist, and primary. Any advice please.

 

Thank you

he has not been tested for celiac, at least not in what you have posted.  those last two are for colitis, not celiac.

[bayba792]

Frieze, That is what I thought but the Dr said that the last test would detect celiac disease if he had it. I didn't know to much about the celiac panel so I just took their word. Since my husband started the process he would take a picture of the ordered blood test so we know what to request. The only part that sucks is that my sons GI wants to dismiss it as IBS. I am requesting a second opinion.