October 26, 2010 at 10:50 am #88074berryMember
We first started out with a Naturopathic Dr. who stated that just by looking at us, she could see we were dealing with food intolerances! Her blood testing showed our daughter at 13 to have an alkaline phosphatase level SO high, she had to run it 3 times to make sure it wasn't a mistake. Her eosinophils were 7.7% and high lymphocytes. Our son had elevated eosinophils, high lymphocyte count and low WBC. My husband's liver enzymes were elevated. I didn't do blood testing at that time because I thought I was healthy.
Then we used the Prometheus blood test for our daughter, with IgG serological marker for celiac disease detected. My husband's Prometheus blood test was totally negative for any serological markers for celiac. We then proceeded to use Enterolab, using the stool and DNA testing.
Daughter: HLA-DQB1*0201,0301–DQ2, DQ3 In 2005, her Fecal Antigliadin IgA was 51, Antitissue Transglutaminase IgA 37. Microscopic Fecal Fat 174.
In 2009, we retested her with Enterolab because she was totally whacked out—physically and mentally and I had a hunch she was still getting gluten even on our meticulously 'GF' diet. Antigliadin IgA 81, Antitissue Transglutaminase IgA 55 and Microscopic Fecal Fat 578. Amazingly, her numbers were HIGHER after 4 years on a GF diet than while eating full gluten diet!!!
Husband: HLA-DQB1*0201,0503–DQ2, DQ1
Myself: HLA-DQB1*0201,0301–DQ2, DQ3
Son: HLA-DQB1*0301,0503–DQ3, DQ1
All of us, with the exception of my son, had elevated antigliadin IgA and fecal antitissue transglutaminase IgA. Interestingly enough, ALL of us got better and healthier on a GF diet. And even though our son apparently does not have celiac according to his genetics, he now gets just as sick as his sister when he gets gluten—joint pains, lowered immunity, headaches, bone pains, bloody noses, crankiness and poor academic performance.October 26, 2010 at 1:36 pm #8809
Blood tests for celiac markers are very inaccurate. Your son has gluten positive genes. In my experience, having gluten intolerant genes determines ones reaction to gluten better than any other type of test. It is the most advanced and reliable way to make a diagnosis. Glad to see your family making the connection and feeling better!October 26, 2010 at 2:02 pm #88104berryMember
I know, the blood testing is terribly inaccurate, I can't believe it's still used as a front line testing! I firmly believe in the genetic testing for proper diagnosis. I still can't get over that our daughter was sicker after being 'GF' for 4 years than when we first instigated testingNovember 4, 2010 at 8:47 pm #8820orangebeeryMember
Gluten Free Society said:
Please share how you discovered you have gluten sensitivity…
- Genetic Testing
- Antibody Testing (Anti-gliadin, Anti-tissue transglutaminase, anti endomysial antibodies, etc)
- Elimination Diet
I went to see a new doctor to get my thyroid checked, but was having severe abdominal issues. The doctor ran antibody tests and put me on a gluten free diet. She is also gluten free. The antibody test came back normal, but due to my symptoms getting better and family history, I was diagnosed as gluten intolerant. Deficient in Vitamin D, also diagnosed as Hypothyroid. She said I could have a stool test if I want, but that meant getting back on gluten, so I declined.November 7, 2010 at 1:07 am #8822Jackie ScarbroughParticipant
You actually don't have to go back to consuming gluten for the stool test. I did it after being gluten free for 8 months and it was still positive, after having negative blood testing prior to going gluten free. BUT if you feel better on the diet and are convicted to it, then there's really no need for futher testing anyway IMO. I needed to convince myself though, now I will never look back.November 12, 2010 at 7:44 am #8826
DNA testing is the most accurate tool. You do not have to eat gluten for this test to come back positive. If you need a definitive answer you can get tested online at the following link:
Welcome to the forum!
Dr. ONovember 17, 2010 at 3:12 pm #8832manonashMember
HLA-DQB1 Molecular analysis, Allele 1 0202
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)
Fecal antibody levels were normal.
Blood antibodies were normal.
Duodenal biopsies were normal.
I have a rash on my hips that I think may be Dermatitis Herpeformis, but it's not textbook. It's bilateral, and extremely itchy, and will itch a couple of days before the lesion shows up (if it ever does), and when it does show up, it looks like a flake of dry skin there (if I haven't scratched it off first). Most of the time it just likes a purple spot of excema. When it first started happening a couple of years ago, I thought I was getting shingles.
I've never been tested, but I think I may be IgA deficient. I don't know what makes me think that though, other than I have no explanation for why all my antibody tests come back normal. I don't get sick easily — as a matter of fact, if a tummy bug is going around, it won't hit me as hard as it hits the rest of the family. An IgG test for wheat came back really high about a year ago, but it wasn't gluten specific. I am also IgE allergic to wheat — class 2.
Here's the rest of my Enterolab results:
Fecal Antigliadin IgA 6 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 6 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score 287 Units (Normal Range <300 Units)
Fecal anti-casein (cow’s milk) IgA antibody 6 Units (Normal Range <10 Units)November 20, 2010 at 3:28 pm #8841aromaverdeMember
I recently did the blood gene testing and tested positive for hla dq2 and hla dq 8, but I am also a type 1 diabetic and I read that they are the same. I am very ocnfused about all of this.
About 7 years ago I had an Entero labs stool gluten sensitivity test done. I didn't know much about gluten then, but a freind told me to get one. Entero Labs said I was fine, but it also says :
HLA DQB1 0201, 0302
So I don't know and I have no idea what to eat and what not to eat. All I know is that I am very sick- to the point of having to go to the ER becasue my heart can't catch up with my body at times and I am very fit and not overweight. I also have a severe bacterial overgrowth somewhere in my intestines that will not go away no matter what except with Flagyl.November 20, 2010 at 5:57 pm #8843farmwife67Member
Have you tried probiotics? There is a good show by Doug Kaufman on tv it is called Know the Cause. It is all about fungus infections. The only thing Dr.'s look for is viral and bacterial, so we take these antibiotics and kill all of the bacteria – good and bad, which leaves room for the fungus to take over and then we are in real trouble. I would seriously try to find a Doctor. Sometimes DO's are more open to candida and fungus growth then MD's. DON'T GIVE UP! Look for a Dr. that treats the whole body. Good luck, did you say where you are from? I found a Dr. that I am going to my first appointment in Dec. I am located in Michigan.
LoriNovember 21, 2010 at 1:54 pm #8847
Based on your gene test results, you should be avoiding gluten like the plague!
Make sure you watch video #1 so that you get a full understanding of what gluten is.
Hang in there!
Dr. OJanuary 29, 2011 at 3:14 pm #8976Bruce MurphyMember
I self diagnosed after reading ” Living Gluten free for dummies” , went GF and I knew within 3 days that I was intolerant.
I told my GP and he said ” If it hurts, don't do it.” and walked out of the room !!!! He has also refused to prescribe any allergy tests, said to avoid foods that don't agree with me.
So I am having a hard time getting any of my family ( sister is a nurse, Father was a surgeon, mother was a nurse ) to consider having tests done. They find it hard to imagine not eating bread, so they wont try it.
Personally I feel its much better to know, and be able to choose what I eat, rather than being sick all the time and not knowing why.
Im keeping a food diary now, and this has helped me to realize that I also have a problem with corn, which I was hoping would not be the case, but the rumble in my gut, along with the headache and the ringing in my ears is telling the truth.
I havent had any formal positive tests, but I am going by what is the only really important measure to me, and thats what my body says is good or bad. I guess I just have to live with the doubters and cynics.
BruceJanuary 29, 2011 at 8:35 pm #8977farmwife67Member
You are smart to stop eating what bothers you. I truly believe grains are slowly killing people. I know a lot of people here would agree. I still try to convince people sometimes and some of those people are REALLY sick with things I believe this diet would help. It is so hard for me to understand being so addicted to food that you can't change your way of eating in order to feel better. But, then I think about it and it took me forever to decide to do something. Even though I always knew I was obese I chose not to do anything about it. It took a medical diagnosis for me to finally change my way of eating. So, all you can do is hope and pray they will find a reason to change their way of eating. Living with the doubters is hard but probably what you will have to do. Just don't let them be food pushers and try to sabotage your diet. You are doing the right thing!
LoriMarch 7, 2011 at 1:28 pm #9046PAMIMember
Belive me I still don't understand all of this.
So this is me – PAMI
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 56 Units (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 30 Units (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)
Fecal Anti-casein (cow’s milk) IgA 20 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0301
HLA-DQB1 Molecular analysis, Allele 2 0601
Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)
Interpretation of Fecal Anti-gliadin IgA: Intestinal
antigliadin IgA antibody was elevated, indicating that you have active
dietary gluten sensitivity. For optimal health, resolution of symptoms
(if you have them), and prevention of small intestinal damage and
malnutrition, osteoporosis, and damage to other tissues (like nerves,
brain, joints, muscles, thyroid, pancreas, other glands, skin, liver,
spleen, among others), it is recommended that you follow a strict and
permanent gluten free diet. As gluten sensitivity is a genetic syndrome,
you may want to have your relatives screened as well.
Interpretation of Fecal Anti-tissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.
Interpretation of Quantitative Microscopic Fecal Fat Score: Provided
that dietary fat is being ingested, a fecal fat score less than 300
indicates there is no malabsorbed dietary fat in stool indicating that
digestion and absorption of nutrients is currently normal.
Interpretation of Fecal Anti-casein (cow’s milk) IgA: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are
indicative of an immune reaction, and hence immunologic “sensitivity” to that food.
For any elevated fecal antibody level, it is recommended to remove that food from your diet.
Values less than 10 indicate there currently is minimal or no reaction to that food and hence,
no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people
cannot make IgA at all, and rarely, some people can still have clinically significant reactions
to a food antigen despite the lack of a significant antibody reaction (because the reactions
primarily involve T cells), if you have an immune syndrome or symptoms associated with food
sensitivity, it is recommended that you try a strict removal of suspect foods from your diet
for up to 12 months despite a negative test.
Interpretation Of HLA-DQ Testing: Although
you do not possess the main HLA-DQB1 genes predisposing to celiac sprue
(HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you
have two copies of a gene that predisposes to gluten sensitivity (any
DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two
copies of a gluten sensitive gene means that each of your parents and
all of your children (if you have them) will possess at least one copy
of the gene. Two copies also means there is an even stronger
predisposition to gluten sensitivity than having one gene and the
resultant immunologic gluten sensitivity may be more severe. This test
was developed and its performance characteristics determined by the
American Red Cross – Northeast Division. It has not been cleared or
approved by the U.S. Food and Drug Administration.March 24, 2011 at 10:10 am #9060Kimberly PetersenParticipant
I self diagnosed with elimination diet almost 20 years ago now. Still symptomatic all these years with
malabsorption, chronic diarrhea and associated fatigue and irritibility. All inspite of being on a classic gluten free diet along with no corn or dairy. I'm old enough now to have had a matabolism slow down which seems to have helped the chronic bowel spasms some, but I'm still wrapping my head around no rice flour as I've relied on it so heavily and on the products I have bought/made from it. It's nice to find this site that confirms I'm not crazy and this really does impact your life – social life especially – hard. I've always gotten the feeling that people think I'm my own worst enemy, overreacting. I feel less isolated now. Thanks! Now if I can just get it into gear and get a diet I handle physically and will do personally…. there's the lazy and convenience factors to get over! 🙂June 3, 2011 at 6:02 pm #9187Patricia LMember
On the 2nd visit to my new PCP she really read over my symptoms carefully. We just couldn't figure out why I was gaining weight as a vegan and walking 2-3 miles a day. I have Fibromyalgia too, which was confusing the issue. Then she looked at my knees and saw that both of them were covered with a bumpy, itchy rash. I had had it on my elbows, lower buttocks, head and neck but I was packing up our house to move and figured I had gotten into something while packing. She had another patient whose dermatologist had the same thing and had Celiac. So, she told me to go gluten free and did a blood test. I was having a colonoscopy the next week, so he also did an endoscopy and biopsies. Both the blood test and biopsies came back negative but the change in diet was working. I lost 15 lbs, my abdominal pain went away, my rash cleared up, I wasn't bloated anymore, and no more gas. This gluten free diet did include rice, although I did cut out corn and soy. I can tell when I eat something with gluten but seem to have hit a wall. My constipation is back, I'm feeling depressed again, gas is back (but not as bad), and I have headaches. My Fibromyalgia pain, problem with balance, and paresthesia is worse again too. I've also developed hypertension, which I've NEVER had a problem with before. I've been eating this way for 3 months now…am I going through detoxing? Or heredity?
So, after finding this Gluten Free Society and watching some of the videos, I have cut out all grains. I'm at a loss now how to eat so I get the proper nutrients…and how to cook for my husband. It's hard making 2 meals…I feel like I am making the same thing all the time.
I guess that makes it elimination diet for diagnosis as well as a collection of related symptoms.
- You must be logged in to reply to this topic.