intro questions and genetic question!

[Guest guest]

OK I guess I am not sure I understand. I have 3 daughters. Daughter A age 27 has had severe recurrent ear infections all her life, worse when eats wheat, however she has no wheat allergy, skinny till about 14 then got heavy, developed asthma. Daughter B, age 24, was tiny as a small child up till about 14. As in at age 11 she was wearing size 7 clothes, at 14 or so she complained of pressure on her chest, later followed by migraines, alopecia (hair loss) and last she developed Rheumatoid Arthritis. Her RA appeared as severe, most joints are involved, very high SED rates, but no RA factor. 4 years later still no RA factor. RA factor usually indicates a more severe form of RA and if don't have people will usually develop RA factor. No RA Factor normally =a mild form of disease which is not what she has. 3rd daughter age 14 has asthma, allergies, and just now is complaining of pressure on her chest causing difficulty sleeping. MD's response was the same as for daughter B Stress. We homeschool, her life is pretty stress free.

In September 03 I found out I have an uncle whose family has a history of Celiac. My MD did Blood tests on me and I was negative. ( I have Psoriasis for last 24 years never been biopsied, allergies.) In the Oct of 2003 we went gluten free. I stopped having frequent food poisoning, stomach aches I've had for years and assumed were just part of life. Daughter A, B, and 14 year old have some degree of stomack/gastro upset if get gluten after being gluten free.

In October had testing done by Entrolab for Daughter A, B, and myself (Mom). Everyone said we'd gone gluten free too long almost a year But...

Daughter B (with RA) has both HLA-DQ2 and HLA- DQ8, her Gluten Sensitivity Stool Test Fecal Antigliadin IgA 70 Units (Normal <10) Fecal Antitissue Transglutaminase IgA 47 (Normal <10), Small Intestinal Malabsorption Microscopic Fecal Fat Score: 409 Units (Normal< 300), 58 yeast, 57 casein, 64 egg (Normal Ranges <10 Units). This after a year gluten free.

Daughter A Molecular analysis: HLA-DQB1*0603, 0301

Serologic equivalent: HLA-DQ 1,3 (Subtype 6,7)

Gluten Sensitivity Stool Test Fecal Antigliadin IgA 18 Units (Normal Range <10 Units), Fecal Antitissue Transglutaminase IgA 22 Units (Normal Range <10 Units)

Small Intestinal Malabsorption Microscopic Fecal Fat Score: 283 Units (Normal Range < 300 Units), anti-casein IgA antibody 16 Units (Normal Range <10 Units)Mom

Molecular analysis HLA-DQB1*0603,0302

Serologic equivalent HLA-DQ 1,3 (subtype 6,8)

Antigliadin IgA 43 (normal 10), Fecal Antitissue Transglutaminase IgA 37 Units (Normal Range <10 Units) Small Intestinal Malabsorption Microscopic Fecal Fat Score:368 Units (Normal Rasumed were just part of life. Daughter A, B, and 14 year old have some degree of stomack/gastro upset if get gluten after being gluten free.

In October had testing done by Entrolab for Daughter A, B, and myself (Mom). Everyone said we'd gone gluten free too long almost a year But...

Daughter B (with RA) has both HLA-DQ2 and HLA- DQ8, her Gluten Sensitivity Stool Test Fecal Antigliadin IgA 70 Units (Normal <10) Fecal Antitissue Transglutaminase IgA 47 (Normal <10), Small Intestinal Malabsorption Microscopic Fecal Fat Score: 409 Units (Normal< 300), 58 yeast, 57 casein, 64 egg (Normal Ranges <10 Units). This after a year gluten free.

Daughter A Molecular analysis: HLA-DQB1*0603, 0301

Serologic equivalent: HLA-DQ 1,3 (Subtype 6,7)

Gluten Sensitivity Stool Test Fecal Antigliadin IgA 18 Units (Normal Range <10 Units), Fecal Antitissue Transglutaminase IgA 22 Units (Normal Range <10 Units)

Small Intestinal Malabsorption Microscopic Fecal Fat Score: 283 Units (Normal Range < 300 Units), anti-casein IgA antibody 16 Units (Normal Range <10 Units)Mom

Molecular analysis HLA-DQB1*0603,0302

Serologic equivalent HLA-DQ 1,3 (subtype 6,8)

Antigliadin IgA 43 (normal 10), Fecal Antitissue Transglutaminase IgA 37 Units (Normal Range <10 Units) Small Intestinal Malabsorption Microscopic Fecal Fat Score:368 Units (Normal Range < 300 Units), anti-casein IgA antibody 34 Units (Normal Range <10 Units)

It appears that Dad must carry genes as well and that daughter C cannot have avoided some of these genes. We had the whole family go gluten free after getting results. Husband says he feels better, is less tired and in less of a fog and does not want to eat wheat.

Daughter A and I went to primary MD with this and he said "there are many reasons we could have gotten the scores we had. If you think you feel better gluten free; it won't hurt you." He then did blood tests on daughter A (wheat free 17 years, gluten free over 1 year). Those blood tests were negative and from our conversation with him I would assume we do not need to be gluten free? Daughter B is aware that all her children will carry at least one of the genes So she wants to know if that means they will need to avoid gluten? If lots of people have these genes, what do the genes mean? Should one be gluten free? As daughter B has both main genes that predispose to gluten sensitivity and Celiac sprue, how does one wait till one is diagnosed? How do we treat the 14 year old which the best gene possibility is Daughter A. Can we say we have celiac or gluten sensitivity? I obviously don't want our 14 year old going down the same path as her 24 year old sister. Being pushy in restaurants, vigilant, and hardest eating with friends and at friends houses, some clarity, words of wisdom would be nice. What do we tell our families? We haven't got past the blood tests, why & how are the stool and gene test valued.

Daughter's RA is worse if she eats any of the offending items but she is not pain free when not eating them.

Sorry this is so long. I hope it is clear as this is so important to us. Any thoughts would be useful on or off the list

Thank you all We wouldn't be managing without this list.

Beth in Syracuse, NY

[Guest guest]

> OK I guess I am not sure I understand. I have 3 daughters. Daughter

A age 27

> has had severe recurrent ear infections all her life, worse when

eats wheat,

> however she has no wheat allergy, skinny till about 14 then got

heavy,

> developed asthma.

Bakers asthma can result, as a result of flour use, in individuals

without DQ2.3 of DQ8. THe paper describes it as an omega-gliadin

allergy that differs in T-cell restrictions sites relative to alpha-

gliadin.

> Daughter B, age 24, was tiny as a small child up till about 14. As

> in at age 11 she was wearing size 7 clothes, at 14 or so she

complained of

> pressure on her chest, later followed by migraines, alopecia (hair

loss) and last

> she developed Rheumatoid Arthritis. Her RA appeared as severe, most

joints

> are involved, very high SED rates, but no RA factor. 4 years later

still no RA

> factor. RA factor usually indicates a more severe form of RA and if

don't have

> people will usually develop RA factor. No RA Factor normally =a

mild form of

> disease which is not what she has. 3rd daughter age 14 has asthma,

allergies,

> and just now is complaining of pressure on her chest causing

difficulty

> sleeping. MD's response was the same as for daughter B Stress. We

homeschool, her

> life is pretty stress free.

This sounds like CD

> In September 03 I found out I have an uncle whose family has a

history of

> Celiac. My MD did Blood tests on me and I was negative. ( I have

Psoriasis

> for last 24 years never been biopsied, allergies.) In the Oct of

2003 we went

> gluten free. I stopped having frequent food poisoning, stomach

aches I've had

> for years and assumed were just part of life. Daughter A, B, and 14

year old

> have some degree of stomack/gastro upset if get gluten after being

gluten free.

> In October had testing done by Entrolab for Daughter A, B, and

myself

> (Mom). Everyone said we'd gone gluten free too long almost a year

But...

>

> Daughter B (with RA) has both HLA-DQ2 and HLA- DQ8, her Gluten

Sensitivity

> Stool Test Fecal Antigliadin IgA 70 Units (Normal <10) Fecal

Antitissue

> Transglutaminase IgA 47 (Normal <10), Small Intestinal

Malabsorption Microscopic

> Fecal Fat Score: 409 Units (Normal< 300), 58 yeast, 57 casein, 64

egg (Normal

> Ranges <10 Units). This after a year gluten free.

>

> Daughter A Molecular analysis: HLA-DQB1*0603, 0301

HLA DQA1*0103:DQB1*0603 a suspressor of some autoimmune diseases

HLA DQA1*0505:DQB1*0301 at risk for CD via transhaplotype. The

DQA1*0505 could be 0501 if you have native american or african

ancestry.

Otherwise HLA DQA1*0303:DQB1*0301, a possible risk factor for

autoimmune myasthenia gravis in Japan.

The 0603 haplotypes are negatively associated with rhuematoid

arthritis in the finnish population, I would say based on global

sampling, negatively associated with most autoimmune diseases. It

appears to suppress diseases in individuals with susceptibility

haplotypes. I don't know why, looking at A*0103 that it appears

to play this role. FOr example A*0103 B*0601, A*0103 B*0603 are

negatively associated with several diseases. The A*0102 B*0602/4/9

and A*0105 B*0502 appear to be positively associated. A*102 B*0301

transhaplotype may be a factor in some of these diseases and I am

somewhat suspicous that it may be a rare factor in CD. _But_ your

daughter and you have probably (95% certainty) not got A1*0102.

> Serologic equivalent: HLA-DQ 1,3 (Subtype 6,7)

DQ1 = DQB1*050x 0r DQB1*060x

DQ7 = DQB1*0301, DQA1*0303:DQB1*0301 or DQA1*0505/1:B1*0301

> Gluten Sensitivity Stool Test Fecal Antigliadin IgA 18 Units

(Normal

> Range <10 Units), Fecal Antitissue Transglutaminase IgA 22

Units (Normal

> Range <10 Units)

> Small Intestinal Malabsorption Microscopic Fecal Fat Score: 283

Units

> (Normal Range < 300 Units), anti-casein IgA antibody 16 Units

(Normal Range <10

> Units)

I seriously doubt this individual has alpha-gliadin intolerance. The

individual may have a omega-gliadin allergy which can cause problems

but not to a pathological degree. Since the factors of CD run in the

family the combination of factors plus DQ7 might cause abnormally high

> Mom

> Molecular analysis HLA-DQB1*0603,0302

> Serologic equivalent HLA-DQ 1,3 (subtype 6,8)

> Antigliadin IgA 43 (normal 10), Fecal Antitissue Transglutaminase

IgA 37

> Units (Normal Range <10 Units) Small Intestinal Malabsorption

Microscopic Fecal

> Fat Score:368 Units (Normal Range < 300 Units), anti-casein IgA

antibody 34 > Units (Normal Range

I think that HLA DQA1*0103, which is the haplotype partner in

HLA DQB1*0603 is a suppressor of autoimmune disease, therefore if you

had not had this suppressor you might have had more severe disease.

These are the haplotype associations with DQB1*0103

DRB1 DQA1 DQB1 Freq

1301 0103 0603 0.0556

1501 0102 0603 0.0021

1104 0103 0603 0.0011

1301 0102 0603 0.0003

1302 0102 0603 0.0003

95.45% is associated with DQA1*0103

93.6% is DRB1*1301:DQA1*0103

Nodal peak in western europe is along the

Northern coast of france, Belgium and denmark

extending to Poland. The flemish/danish appears to be a like site

for most diffusive spread.

The rate of antibody decline in CD individuals can take time. Scores

above normal are not neccesarily indicative of disease, but disease

symptoms, family history and DQ type are (more or less) better

guides. the tTG is from guinea pig and gives false positives and

negatives.

I myself tested my Ab levels 4 mos after going gliadin free and

amoung 60 individuals tested, several suspected CD by one associated

disease and all with DQ2.3 or DQ8 had an antibody level the 2nd.

At the time I tested the antibody levels I would consider the disease

remission to be in accelerated pace. #2 abd #3 shared the same rare

last name. ;^).

There were several things I could not eat, for example cheese,

beef, etc. Most of the things I could not eat in february I can eat

now, and so the judgement that going off allergenic foods for 8 mos

appears to have resolved all allergies except wheat, of course, and

chicken (but that is because I cheated). I am currently about 5 mos

without chicken and I will try it again soon.

Everyone is different however, and B may have a better immune

memory than I do and it may take her a year. After cessation of wheat

consumption (Wheat, Barley[Malts, beer], Rye) the maximum tolerance

appears to be 1/2 mg per week of gliadin, which is pretty close to

zero. If this is rigorously obeyed then in 8 mos of not consuming

allergy foods those secondary allergies should clear. If not try 16

mos.

I terms of what causes your stomach problems the diagnosis is not

so clear. There is no ill consequences to going wheat free in my

opinion even if you are tolerant. The issues are matters of

convinience. Many individuals in CD families who are not CD have some

non-pathological synsetivity to wheat, this does not mean it isn't

dangerous, for example omega-glaidin intolerance is associated with

asthma attacks in atletic individuals and is beleived to be the

result of reflux during exercise, with the gliadin _allergy_ (notice

i did not use intolerance) a possible cause of the enhanced reflux.