Please Help With Wife's Lab Work

[plowboyjames]

Hi,

My 35 y/o wife (Linda) has been sick and has gained about 80 pounds over the last 2 years. She recently had some labwork done. The doctor talked fast and she mentioned Lupus, ulcerative colitis, and Celiac's. I am not sure if she knows what is wrong with her. She prescribed a Helidac pack to treat H.pylori in the gut. Anyway, here are her lab results:

Sed rate = 100 (I think normal is 20 or less)

WBC = 13.1 (normal is 4 to 11)

Anit-Nuclear Antibodies - positive

ANA Titer 1:320 Speckled Pattern

Gliadin IgG = 5.5 (normal = <10)

B-12 level low at about 350

She has had severe headaches and has been on hydrocodone and methadone for this. Her thyroid test (TSH, Free T3, Free T4, Reverse T3) came back in normal ranges. T3 uptake was a little elevated at 39.3 (range is 20-38.5). Most of her labs came back normal. A few things in her CBC were out of range besides WBC (i.e. Neutrophils elevated, lymphocytes low, & monocytes low).

She has had odd physical sensations for at least 2 years (i.e. the headaches, burning, tingling, crawling under her skin, etc). Doctors think she is crazy, but I think she has just been in pain. I would appreciate any help. I have a sick son too (autism, Chrohn's disease) so I really have my hands full. Any ideas on what my wife's problem may be? Thank you so much.

James

[KaitiUSA]

There could be more then one thing going on here...at least that's what it sounds like. There is a possibility that she has celiac and it has been undiagnosed for a while and is now getting other problems. Gaining weight and those symptoms can be associated with celiac. Everyones symptoms are different.

She should get a full celiac panel to rule celiac either in or out. The full panel includes:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The tTG and EMA are the most specific for celiac.

Also, she maybe should get a gene test because 98% of celiacs have either the HLA-DQ2 or HLA-DQ8 gene.

Celiac is often misdiagnosed for things like IBS, Crohns. Autism is also linked to celiac.

If your wife does test positive then your son needs to be tested.

If you go to the homepage of this site and scroll down there are recommended doctors made by other celiacs. You can look for ones under your state.

Doctors ignored me and my parents for over a year and it took many changes of doctors until it was found.

I hope she feels better soon and you guys will be in my prayers

[LaurieAnn13]

Hi James -

I am so sorry to hear all the health problems with your wife and son! What a struggle.... Now, granted I'm not a doctor, but has your wife experimented with the gluten-free diet to see if she feels better? I know from this forum (and experience), that sometimes your body is the best indicator.... because many people have had inconclusive test results but responded extremely well to the diet.... Also, I know autism and crohn's disease have high correlations with celiac disease, has your son been tested for it?

I know it's hard, I struggled for years with health problems (as I know most of the people on this site have!) before they found out the true source... depression, vertigo, IBS, migraines, (and those are just the things they actually diagnosed me with, not to mention the fatigue, nausea, etc) and just plain getting sick all the time because my immune system was fed up with everything!! I also had some sort of skin problem where I would get all these open sores that would not heal, they finally (!!!) cleared up after my diagnosis, and to this day no doctor is able to tell me what it was, though I have lots of scars from it!

One more thing - it almost sounds like you feel your wife's doctor is not very compassionate? Perhaps, you might consider finding a new one who understands and believes your wife has a problem? But maybe I misunderstood that comment?

Good luck - I will keep you guys in my prayers!

Laurie

[plowboyjames]

She had other test. I did not include them because I thought they were normal. Here they are:

Glidian IgG=5.5

Glidian IgA=1.9

TTG IgG=1.1

TTG IgG=1.1

She had a colonscope several years ago and a GI doc said she had ulcerative colitis. A think she had tried the gluten-free diet in the past (herself and also with my son when he was much younger). Our son had all kinds of food allergies when he was a little fellow. He now can eat pretty much anything, but was diagnosed with Chrohn's at least a year ago.

Kaiti, thanks for the good advice. The info about the testing will really help. We will also look at the doctor recommendations. And thanks for your prayers. God bless. James

[Guest BERNESES]

James- You have come to a good place whether or not your wife and son have Celiac's as people here are very compassionate and kind and many of us have been through the "It's all in your head thing" too. Not very nice.

Follow up on people's recommendations and I hope for the best for you and your family. It's not easy having a sick wife (I'm one of them but making huge improvements on the diet). Even if it's ulcerative colitis (which is quite serious) she may feel better from this diet. But try to get a medical confirmation first. Best to you, Beverly

[plowboyjames]

Hi Laurie Ann,

Thanks for the kind words. I think she is going to try to gluten-free diet again. She has not tried it in years. She has gone thru some depression. I think she may have the will power now to stick to a gluten-free diet. I honestly don't know if my son has been tested by his GI doctor, but I need to ask. Poor thing....it sounds like you have really been thru it. It sounds like you are doing better now. No, the doctor could be more compassionate. Thank you for your prayers. And God bless you.

James

[mommida]

A think she had tried the gluten-free diet in the past (herself and also with my son when he was much younger). Our son had all kinds of food allergies when he was a little fellow. He now can eat pretty much anything, but was diagnosed with Chrohn's at least a year ago.

From your post I can tell you that sounds typical of Celiac. Some call it the "honeymoon phase".

My experience with Celiac testing has not been good. I think it is seriously lacking accuracy. If your wife's test came back negative, I would still consider trying the gluten free diet.

Laura

[celiac3270]

She should get a full celiac panel to rule celiac either in or out. The full panel includes:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The tTG and EMA are the most specific for celiac.

Also, she maybe should get a gene test because 98% of celiacs have either the HLA-DQ2 or HLA-DQ8 gene.

Not exactly...the AGA IgA and AGA IgG aren't specific or sensitive enough...and are therefore, according to most celiac experts, not worth running. It's basically the tTG and the EMA, though the total serum is also good to run.

The tTG is the best test to have run--most specific and accurate. The EMA is a little less popular because of expense (primarily due to the means by which they interpret the results) and the fact that it's a + or - (no numbers that you can monitor). The AGA is all but extinct. Of course, the biopsy is the gold standard for diagnosis... and gene testing should be done to rule out a false pos. on the tTG. 95% of celiacs have the HLA DQ2, but then again, 37% of the population does, so the gene testing cannot be used to diagnose celiac, but only to rule it out. 5% have the DQ8, and of course some have both. If you have neither, you can rule out celiac.

[skbird]

Hi James -

I'm in a similar place. I have been diagnosed with non-Celiac gluten intolerance and recently went in for some tests to rule out any other auto-immune disorders, like thyroid and arthritis. My thyroid was fine and sed rate, RH factor all normal. But my ANA was high positive.

ANA TITER = 1:320

Fluorescence Pattern = Nucleolar

High Range ANA Titer. Usually indicative of connective tissue disease. Complete ANA profile testing suggested.

Note: Nucleolar staining is suggestive of autoantibodies to 4-6S RNA.

I don't know if this means anything or not but can tell you that I have weird sensations in my wrists and knuckles - sometimes painful, sometimes more of a pressure feeling. Might be described as crawling. I also get restless legs and have had a bout with Raynaud's phenomenon in the past (4 years, ending about 4 years ago). I don't know what all this means - seems like it could be lupus but I don't have many of the other symptoms. Could be a slow progressing thing. For your wife it sounds like she is experiencing more symptoms. I am being referred to a rheumatologist and hope to find out more from the tests they do. It seems your wife should have more tests to find out what is going on with her ANA. I have been told it might mean nothing - it can be raised for nearly no reason but if she has symptoms, then that should be pursued.

It does appear that a gluten free diet is helpful for this. I didn't have very high gluten scores on my tests but feel so much better not eating it it's worth it. I have had migraines my whole life and had gained about 40 pounds a few years back, for no aparant reason. I lost that when I went mostly gluten free and now only have migraines when I get a little gluten in my system. I think she could benefit from trying the gluten free diet - and it sounds like your son could, as well, as both Chrohns and autism can be aggravated by gluten consumption.

I'm sorry you have so many health challenges in your family. I hope you are able to find a comfort zone for yourself - your health is important too. Take care and keep reading.

All of my best -

Stephanie

[skbird]

95% of celiacs have the HLA DQ2, but then again, 37% of the population does, so the gene testing cannot be used to diagnose celiac, but only to rule it out. 5% have the DQ8, and of course some have both. If you have neither, you can rule out celiac.

I have read that there is something like 1-5% of people with Celiac who don't have either of those two genes. I don't have either, and I don't believe I have Celiac as I don't seem to have malabsorption, but I do have intense gastrointestinal symptoms and also neurological ones when I consume gluten. So it's important to consider that while the main diagnosis of Celiac may be ruled out (through biopsy, etc) that doesn't mean there isn't a gluten intolerance that is wreaking havoc.

Of the two genes I have, one is associated with gluten ataxia and neurological symptoms, the other is nearly a twin of the DQ8, and research has shown that there is a 10% reaction of that of the DQ8 gene for Celiac in those with this gene.

From Dr. Fine (of EnteroLab):

Here is the reference on DQ9 (0303).

Thanks

Dr Fine

Int Immunol. 2000 Aug;12(8):1157-66. Related Articles, Links

Structure of celiac disease-associated HLA-DQ8 and non-associated HLA-DQ9

alleles in complex with two disease-specific epitopes.

Moustakas AK, van de Wal Y, Routsias J, Kooy YM, van Veelen P, Drijfhout JW,

Koning F, Papadopoulos GK.

Laboratory of Biochemistry and Biophysics, Faculty of Agricultural

Technology, Technological Educational Institute of Epirus, 47100 Arta,

Greece.

The association of celiac disease (celiac disease) with HLA-DQ2 and HLA-DQ8 is

indicative of preferential mucosal T cell recognition of gluten fragments

bound to either DQ allele. We have recently identified two gluten-derived,

HLA-DQ8-restricted T cell stimulatory peptides, one each from gliadin and

glutenin, recognized by specific T cell clones derived from the small

intestine of celiac disease patients. We have now performed molecular modeling and

examined the fine specificity of these peptides in complex with HLA-DQ8.

There is only one binding register for both peptides, with glutamine

residues at the p1 and p9 anchor positions. Both T cell clones recognize

substituted peptides at p1 and p9, but poorly so at p2-p8, especially the

gliadin-specific clone. Contrasting patterns of recognition of p9Gln --> Glu

peptide variants (both predicted as better DQ8 binders by modeling) were

observed: enhancement of recognition for the gliadin peptide, yet complete

absence thereof for the glutenin peptide. The double-substituted gliadin

peptide variant p1/9Gln --> Glu, which can also arise by

pepsin/acid/transglutaminase treatment, shows a considerable increase in

sensitivity of recognition, consistent with better binding of this peptide

to DQ8, as predicted by energy minimization. Surprisingly, the two native

peptides are also recognized by their respective T cell clones in the

context of the related molecule HLA-DQ9 (beta57Asp(+)). The p1/9Gln --> Glu

gliadin peptide variant is likewise recognized, albeit with a 10-fold lower

sensitivity, the first reported p9Glu binding in a beta57Asp(+) MHC II

allele. Our results have important implications for the pathogenesis of

autoimmune disease and the possible manipulation of aberrant responses

thereof.

Anyway, wanted to at least recognize that there can still be gluten problems, even if not actually Celiac. I know there are for me!

Stephanie