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What is interesting about this PA is that she said that her adult d has celiac so she has a personal interest in it. I picked her up from school and she told me that she was scratching more, they are so tiny, I can see how the PA didn't think it would be fully conclusive for DH. I wish we had an expert in this and celiac in our area.
We still need to do the endomysial test next week when she sees ped. I read this needs to be done by a lab tech who is familiar with this test..well obviously they need to know what they are doing, but are there any labs that you know of that can do a lot of the endomysial tests?
The unique situation we have is that she had been treated for eating disorder since May. I've been responsible for refeeding her and we've been doing digestive enyzmes with meals for a good while during that time.
BUT, in the past month we've been supplementing the Gluten Enzyme, inositol, extra B6 and Zinc, a lot of B6 and zinc. And we are using a MindLinx probiotic. I'd say in this past month we've seen more physical signs of wt gain and the scale is showing it too with no extra cals than normal.
I feel that she definitely has a malabsorption problem and she has had food allergies all of her life. I think the ped is not wanting to diagnose celiac either, because she may be fearful that she will get discouraged with a new diet and this will cause a relapse.
The other side is that we know she is gluten allergic/intolerant. Her nose is very congested from the pasta and bagels right now.
I am going to make the decision after the endomysial test and most likely pull the gluten.
Do you think genetic testing should be done for her?
Thanks so much
Well, he couldn't see her, but his PA saw her this morn. She thinks it's not DH, she had one small lesion this morn and she thought it was not large enough to determine. I did ask about the skin adjacent to it, she said "Well, it's so small I'd be getting the lesion and the skin around it"..and she said she knew about doing the skin adjacent to the lesion.
She said with DH it's not transient like in my d's case..she doesn't think it is. Everytime my d eats pasta she will get these small red tiny bumps..the one today from last night is crusted over and they do not stay on skin. We are going to give her more gluten and if there is bigger ones that come on we will go back, but I am wanting to make sure when we do it, it's big enough.
Why is that all these years she gets these on her knees from pasta? There not huge but red tiny and seedy like and they do go away. Am I wasting my time?
I already know she has gluten allergy and her nose is already congested big time today..pasta always does this and bagel she had today. Her IgG was a big score and we still need to do the endomysial test.
The PA said it could be a hive..trust me my d has had plenty of hives in past and it looks nothing like this..they are welts and never have been on knees. Both my kids get these lesions on knees from pasta even though thye are tiny ones.
The PA said DH is not transient, doesn't come and go and stays, so that is why she thinks it's not DH. SHe said she'd be happy to do biopsy though when she has a bigger lesion.
I have tried to "gluten" my d tonight with giving her pasta at dinner time...within 2 hrs "what looks to me like" DH popped out on her knees, mostly right knee. I gave her a bagel before bedtime and will probably give her another bagel for breakfast. The derm said to come in the day it flarses..and am wondering if it's mild. It looks like tiny seeds under the skin and red dots..and it's itchy. I don't want to have it so mild that he can't get a good biopsy..should she be glutened more before taking her in?
I wanted to do an update as I started this thread.
My daughter's pediatrician has agreed to do the other celiac tests that she did not order several weeks ago, after I gave her info on the Columbia University EDU site a member here gave me. We are going to wait and do the other tests in a few weeks after she has had a significant amount of gluten.
She has been taking an enzyme for gluten "gltuenzyme" for several weeks. The blood tests she had came back negative, but we are using the enzymes mostly 3 meals a day now. In the beginning she was only taking it at breakfast and supper.
Tonight, she did not take her gluten enzyme at supper and this was a first. Within an hour and a half or so, she started itching rather intensly on her right knee and I took pics to show the ped as I think it looks like mild dh to me compared to what images I have seen o the internet. She did not have pasta and in the past the only times she would scratch both knees was usually the NEXT day after the pasta. Tonight she had some stuffing and mashed potatatoes turkey gravy but no bread.
BUT, it was only on on her right knee but it was more pronounced and red and itchy than usual.
My thoughts are that the gluten zyme was breaking down the gluten rather effectively and missing a dose when she usually has it 2-3 times a day has now set it off.
Rest assured we will not rely on the enzyme if we find out she does have DH. But this is quite fascinating.
From what I read if you have DH, there is an 80-90% chance you have celiac?? IN the past, she only had the knee breakouts when she ate pasta, but this incident tonight was redder and more itchy than usual..came on shortly after dinner instead of next day.
I am new here and have introduced myself on anonther thread in the Pre-Diagnosis Thread under 12 yr old.
Someone told me that if you have true celiac you will have sensitiivity to gluten only, but if you have sensitivity or allergy to gluten, casein it's mainly found only in gluten sensitivity and not celiac.
My daughter has gluten sensitivity and allergy to dairy and nuts and in past eggs and soy, probably still has soy alllergy too.
Anyone want to give me any studies on this or personal experiences?
I forgot to mention that she has had the mouth ulcers off and on since she was a toddler, but recently they have been much less and she is on a mega amount of supplements so this may be helping..but the mouth uclers finding is interesting.
Thanks so much for this info! I am going to print it out and give it to our ped.
We went to the orthodontist and he said there were no defects and the staining was removed by him by polishing. He said it could be fron apple juice or tea but she's never had this until several months ago.
I am going to ask here since you seem knowledgeable:
Is LabCorp a good lab for celiac panel? The ped is going to do the remaining tests thru this lab in several weeks.
She has also had hip and shoulder problems for past 9 months, hurts to sit for long periods, if this is gluten related, would anything
show on x-ray?
Doctor wants to do a D3 blood level checked and also an adrenal test done by a saliva test, are you familiar with these?
My 12 yr old d has not been diagnosed with celiac...yet, but has a very high IgG to Gliadin Antibody..greater than 100.
She has in the past several months had a new finding of two upper front teeth with staining..looks brown but not all over the teeth and also looks like vertical lines on them, sort of grooves.
She has an appt with an orthodontist tomorrow and he will look at this we are there for case presentation for braces. But I called her dentist today and they have no record where he had recorded any tooth enamel defects or staining. The staining is new.
could this be celiac related where she doesn't have the teeth defects until now?
I had previously asked about DH in another thread.."new here with 12yr old daughter..."
My 12 yr old d has been diagnosed with gluten intolerance..her Gliadin Antibody IGG result was >100 with >17 being positive.
She tested negative to GAntibody (IGA) <3 and TTGA (IGA) <3, although we may be doing the other tests for the panel.
SHe has had atopic dermatitis starting at 2 months old with food allergies and had it moderate-severe as infant and toddler.
Since she was 5 yrs old her AD has been almost non existent, except for chronic itchy knees on the front. I have seen correlation of eating pasta and the next day having more itchy knees with little tiny tiny red bumps but also sometimes non read tincy tiny bumps. She also has these on the back of elbows but does not itch at all. She did have these sometimes on buttocks when young but not anymore.
My 9 yr old son also has the itchy knees and thighs bilaterally, and I see it more after pasta, the next day.
He also had eczema and food allergies when younger.
Can a pediatrician biopsy the skin to check for DH and does it need to be really flared, since the bumps are so tiny and not always red? If they test positive for DH does this mean that they most likely have celiac?
"Just a thought, could her diet in the months before testing have been restricted in the amount of gluten she was consuming? We are advised to eat the equivilant of 4 slices of bread daily for 2 months to have a positive blood test and biopsy. I wonder if her ED made the blood tests a false negative?"
SHe has been eating at least 3 servings of bread daily, some days 4 slices total. I don't think it would have affected it with her test result being >100 for the IgG Gliadian antibody, would it?
Also, she had moderate to severe eczema as an infant and early toddler. SHe has had the itchy front of the knees for years, and I have noticed it more when she eats spagetti noodles or noodles, the next day she will scratch the front of her knees. She does not have eczema anywhere and the front of knees is not an eczema rash It is not the DH that is in the images on the internet, much less , if it is DH, butshe has had the little tiny red dots on her knees. Last night she was scratching at them and it's a very light colored slighly raised bump. My 9 yr old son does the scratching of the knees and lower thighs as well.
She does have tiny tiny bumps on the back of her elbows but never itchy. Fronts of her knees is only itchy spot.
Thanks everyone for your feedback, it is very much appreciated.
Please clarify regarding the positive blood test result : > 100 for Gliadian Antibody (IGG) with positive being > 17.
It was negative results for Gliadain Antibody (IGA), Tissue Transglutaminase antibody (IGA). From what the nurse told me these two negative results meant she tested negative to CELIAC. Is there any other blood tests we should ask to do like Total IGA and the Endomysial test?
She had a blood test in May and also several years ago for Celiac which came back negative but I do not know the specific tests she had.
The ped thought she had celiac at 9 months old, was referred to a ped GI doc and he said NO she didn't have it. She was always on the low end of growth charts for wt. (had multiple food allergies, with milk, egg and nuts being severe). At age 4 I started giving her a combination of Primadophilus Reuteri (a probiotic), a multi vitamin, and a combination essential fatty acid. For about the next 2-3 years I saw an increase in her weight, then at age 8 or so she started declining again on the chart but no weight loss until this past year. D During that time she was not taking the probiotic and essential fatty acids.
Since May, after being hosptialized for anorexia, she has gained 10 lbs except the last month has lost about 3/4 lb., but grew in height. She doesn't complain of stomach pain, but sometimes stomach fullness and some burping. No other GI symptoms, but back when she was 8-9 when we thought she had a started to restrict she would complain of stomach fullness at meal times a lot.
I do not think the gluten is the only factor for the eating disorder. It's quite complex, but I do think it is a contributer now that she has been tested for gluten sensitivity.
I do not know if I have said this before so pardon if I repeat...but I cannot tolerate much whole wheat bread or I am congested. Same for my daugher and my son. She had severe food allergy and both have had eczema as babies and toddlers. She has very loose joints and her wrists have a congenital defect where the bones are too far apart and will one day require surgery. She has weak wrist strength due to this but doesn't affect her except for softball hitting the ball.
My mother was on a no carb diet for months, and now she cannot tolerate wheat or she has GI symptoms...so I am leaning toward celiac on my side of the family or if not it's a gluten intolerance. I have had IBS in past due to stress as well as my mom and brothers.
This is all new to me so if I ask questions that sound that the answer is already obvsious, I apologize in advance