i wish these docs knew about all this. it seems lately that everyone is on this gluten-free diet...I would never want to go on it...its not fun or easy and I miss all the good foods, like today for the holiday
I barely ate anything today and asked about the foods I felt were safe to eat...and then later I began itching so much and the rashes that were going away became so itchy and more red bumps....so upset. I know you talked about eating salt/iodine...two of the foods were quite salty like the ham....could that make me flare up again? btw...I am going to a second doc to get more answers. the lady who is the head of the gluten support group feels that my labs may have been misinterpreted...
so I have done some research and found some answers...but still want to check with doc later. according to my bloodwork, I have the dq genotypes, but my risk factor is low...so that, along with my "supposed" dh rash make me feel the doc said I cant get celiac because I am at a low risk. like I said earlier, the rash mimics the gluten rash a lot. being off gluten makes me feel a lot better, especially once the rash disappears more. if I am at a low risk and have this dh, why would they say no celiac? or am I just going crazy? lol
ok so I am going to have to eat shellfish eventually to test myself. I am not looking forward to that tho....rashes are slowly disappearing...but I hoping the discolorations leave too. its almost summer and they don't look to nice.
it seems that others blood and endoscopy tests were negative like mine...so I am confused about this rash. maybe its just a rash I get from gluten and not dh...cuz that's what my results make me feel.
I still feel really new to being gluten-free and df, so I have a question....someone wrote in that dr. fasano said that gluten intolerant people have inflammation inside...is that for just celiacs? or for others who are gluten intolerant? I am trying to understand all this cuz I recently was told by gi doc I am not celiac, but gluten intolerant ( I posted a question in one of the other forums)
thanks for any info....
wow i never heard about dh and shellfish...I will have to try that. but its taken over a month and now the rashes are going away more...I really don't want to get them back...they are horrible. I am trying hard to keep all gluten n dairy out of me,....I worry with the holiday this weekend. atleast I know what I cook here at home will be safe...worried about when I go to other homes. if for some reason there is any shrimp, I may just eat a lot if I am courageous enough lol!
I have read some of the other threads in this website...so glad I found it. very helpful! tomorrow is another day of my wonderful df and gluten-free life
does it get any easier????
I have done the food diaries before, which what showed me that dairy didn't agree with me...I am going to give it a while longer to see how clear the rash becomes...that way maybe I wont have to stop iodine foods. I never heard of that as a problem with people...seems like a hard diet to stick to. I have a lot of questions for my gi doc when I see him....I just hope he is helpful and doesn't make me feel like I am just going crazy in my head...I know how I feel when I stay on a df and gluten-free diet...it is great! as for the labs....I have no clue....to me it looks like I have the dq genes and am at the lowest level to probably have celiac. the rash to me is dh...I felt that from the beginning...it mimics it so well. hopefully I can get thru easter with no cross contamination because I really don't want to be sick
greenbeanie....thanks for responding. I never thought of sulfites before...but it sounds like there are people like your self that cant have it or need to limit their intake of it. right now I am at a point of just giving up. there is so much info out there about celiac and gluten intolerances that I am overwhelmed. I had joined a gluten support group back in October...its been the best. when I tell my story of the past five years of symptoms, they all said it sounded just like celiac. I told this to my gi doc to who knows about celiac and he also felt that's what I had...until I got all these tests done. he wrote on my lab that I am negative for celiac because of genetics test, so that I am gluten intolerant instead. of course not eating gluten has helped me a lot...
I wish I had the answers to what I need...with my symptoms, especially the rash, I just feel that its celiac. the rash is my biggest problem...I want to stop itching once and for all! lol
I suppose I will never understand my labs...but I appreciate all the wonderful replies to this...
Thank you both so much!
as for the genes with the minus sign...it was my error...on my lab it shows it like this DQ2-, DQ8- I thought that meant "negative", but they would usually be in front of the letters....right? lol I honestly have no clue....this column was under the heading "overall risks for patients carrying the DQ genotype"...the levels go higher and the highest one is DQ2Homozygous. my gene is at the lowest end
so does this mean I have the gene, but at low risk? I sorry if I ask a lot....I am frustrated over all this and just want my body to be normal again. I don't see my gi doc until june, so I will have a lot of questions to ask him.
I think I am just going to continue my gluten-free and df diet...since I know both make me miserable
On the paper it has a box that says at the top "overall risks for patients carrying the DQ genotype". Then there are columns under it in categories ranked from 8 ( extremely high) down to 1 (extremely low). I am at number 1... And shows what DQ genotype I have... Mine in this column shows DQ2-, DQ8
Does this mean I have both types but at low risk?
too funny I just got labs in mail....
deamidated gliadin peptide antibody, IgG (DGP IgG) is 1.3 EU/ml range says <4.9 EU/ml
" " IgA (DGP IgA) is 1.3 EU/ml range says <6.1 EU/ml
anti human tissue transglutaminase IgA ELISA (TTG IgA) is 0.3 U/ml range says <10.3 U/ml
anti endomysial IgA, IFA (EMA IgA) is negative
total serum IgA by nephelometry (TOTAL IgA) is 166mg/dl range for my age of 37yrs. is 44-441mg/dl
it says celiac risk haplotype not detected
DQ2-, DQ8- risk is <0.1x which is extremely low
so, this shows I don't have celiac....and I guess the rash is just some rash I get with gluten. doc wrote on this paper saying I have gluten intolerance
I honestly have no clue what all those numbers and names mean...but thank you for your help
you so seem to know a lot about this ...lol which is good
I started a gluten-free diet sept 28...by my own choice cuz my allergist doubted it was gluten...my food skin test was all normal. a while later I noticed my coffee creamer made me nauseous and then other foods like my gluten-free cupcake and gluten-free pizza made me sick...so I stopped all dairy. this made me feel so much better ,so I began to test myself, and of course was sick and the rash was hitting me hard. the rash itself doesn't appear at first...my skin itches like crazy and then later the rash starts. I wouldn't say pimples...not really sure how to describe it other than red bumps and some looked fluid filled. they definitely are symmetrical on me...backs of both knees, inside both elbows, across my top torso under my chest from one side to other, both sides of neck (but sometimes just one side), and on the crease area of butt ( but again more on one side for this too). the joint pain in elbows is both as well and was extremely painful where I couldn't pick anything up out of my purse....it was tuff. my allergist said it sounded like I had rheumatoid arthritis...
before I went for endosocopy and bloodwork, I went back on a gluten filled diet for about 13 days...
after all my results came back normal, I assumed I just had a gluten intolerance. I don't see my gi doc till june. so since I wasn't confirmed with celiac, I tested myself four weeks ago and took two bites of something that had gluten...needless to say, rash came back, and I still have it now but finally seems to be going away....slowly...
I called doc yesterday to send me lab results so I am waiting for those. I have so many doubts, but feel like I am going crazy cuz of this rash that is horrible...sometimes I think its not dh,....other times I not sure...
besides those symptoms I gave above, I would also itch all over from head to toe, mostly on back, thighs, and tops of feet....but no rash there at all. I would wake up in middle of night itching forever and using a back scratcher to help me....I aslo have been using hydrocortisone cream to get some relief...not helping to much. when I stop gluten, that invisible rash/itching stop within two days which Is great...the rash on other areas stays foever tho
I am new to this site and this is my first post. I have been dealing with joint pain in elbows, anemia, sick stomach, and this unbelievable rash. after many doc appts, I ended up seeing a gi doc who knows about celiac. I have done an endoscopy and tons of blood work which also includes the celiac panel test from a lab called Prometheus in California. everything came back normal...however...I have some doubts. the worse part about all of this is that the rash is so so bad. its the worse symptom I have...taking gluten out of diet helps a lot...but the rash takes a long time to disappear. this rash mimics the exact thing as the "gluten rash...dh" but I thought this was only if you had celiac. everything is the same: itchy rash, pimples together and more come up as other ones heal, clear fluid comes out, my skin is discolored after it starts to leave, and the locations are always the same on my neck, under chest area, lower back, inside of elbows, behind knees and near belly button. I really don't know what else this could be...if anyone knows I would appreciate all the help I can get. thanks so much!