Jump to content

Celiac.com Sponsor (A1):

Celiac.com Sponsor (A1-m):


Advanced Members
  • Content Count

  • Joined

  • Last visited

1 Follower

  • wheeleezdryver

About emaegf

  • Rank
    Star Contributor
  1. Actually that little "Contains:" message is by law required to be there if the product contians any of the top 8 allergens which wheat is one of them. Also having that label there is a good thing as well as the law. So any time you see that pass the product up it's not gluten free.

    The eight foods identified by the law are:

    1. Milk
    2. Eggs
    3. Fish (e.g., bass, flounder, cod)
    4. Crustacean shellfish (e.g. crab, lobster, shrimp)
    5. Tree nuts (e.g., almonds, walnuts, pecans)
    6. Peanuts
    7. Wheat
    8. Soybeans



    If you want to go gluten free you need to avoid all sources of wheat, rye, barley, spelt, etc. Here's a list that shows which ones are ok and which are not http://www.csaceliacs.info/grains_and_flours_glossary.jsp



  2. Blood results as well as endoscope testing will Not be reliable since you are already gluten free.  More tham likely you may have false negatives do to being on a gluten free diet for the five weeks prior to testing.


    The blood tests look for the antibodies your body produces in response to the gluten you eat so when you remove the gluten the body has nothing to form antibodies against so there none for the blood tests to read.  Yes you could still have villi damage that can only be seen by doing a endoscope and taking samples of the intestines. But depending on how badly the damage internally was there also may come out negative do to the damage healing which starts within 24 hours of total removal of gluten from the diet.



    So your best option is the genetic test unless you're willing to go back to eating gluten for 6-12 weeks and then having the blood work and endoscope done. But still if you do have a gene linked to Celiac you may not actually have active Celiac so also do go to a reproductive specialist if you aren't already.

  3. I can save you a few weeks of torture and the gastrointestinal tests, you'll still need the blood work done though. Your blisters are characteristic of Dermatitis herpetiformis (DH) an autoimmune blistering disorder also a symptom some get with a Celiac.


    You need to see a Dermatologist familiar with Celiac and DH and have a skin biopsy done to check for the presence of the antibodies for Celiac in the skin. That is where they collect with DH.  The test must be done 3 to 5 mm away from an active lesion (the blisters). That is then looked at under a microscope where the antibodies can be seen in the skin.


    A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA.

    You need to have the sample looked at by someone who knows what their looking for or there can be an error in the reading also if the wrong sample is taken you'll have to have another done do to the first one being ruined. A proper sample does Not include part of the blister since the fluid from the blister can distort the antibodies under the microscope resulting in an inaccurate reading.

    I've been through this many times before and the test being done wrong resulted in repeated testing. 



    Do some more research on DH on your own then take your findings to your doctor and get in to see a dermatologist asap. 


  4. Two things come to mind - Most preshredded cheese are coated to prevent the shreds from clumping together. Try shredding your own at home.  Second over heating cheeses results in the casein clumping just enough to make a gritty texture.


    I never use starch of any kind when I make alfreado sauce, just cream or milk, butter, cheese and a touch of white pepper. You heat the liquid and butter and let simmer lighty to reduce down, remove from the heat add cheese & pepper stirring until smooth. You do need to watch it while it's simmering to prevent sticking and scorching. Occasionaly stirring it helps prevent that. Once you've goten the cheese in it don't heat over a burner again or it will over cook and the cheese will seize (get clumpy and gritty) and break (fat will seperate from the sauce).

  5. Mono & Diglycerides

    Monoglycerides and diglycerides are different kinds of fat made from vegetables and soybeans. (Most of the fat we consume falls into the triglyceride category.) These ingredients keep the ice cream from separating once mixed. Since only a tiny amount is used, monoglycerides and diglycerides do not contribute any measurable fat calories.


    Polysorbate 80

    Polysorbate 80 is made from soybeans and corn and helps in the whipping and freezing of the ice cream.



    None contain gluten. I believe even if it is a carrier ingredient if it's from wheat in the US it must say so on the label since Wheat is oneo f the top 8 allegens required by law to be on food labels.


    She metioned her son reacts to Polysorbate 80 that doesn't mean that it contians gluten it could be a cross reactive reaction and not a gluten one. There are some foods that some Celiacs react to that do not contain gluten but they react the same as they would to gluten.  http://andrewcordova.com/is-coffee-gluten-free/


  6. As Peter explained, it's a density, not an amount.  And this is why I find this "threshold" SO ridiculously annoying.  What is the actual DOSAGE (quantity) that causes most people to show damage?  I'm not sure that I've ever convincingly figured that out from the studies that were done for the "20ppm" standard.


    I've read most Celiacs don't react until 20 ppm so a less than 20 ppm is supposed to be ok for us hence the threshold for amount allowed and still be called gluten free. I've also read that Celiacs don't react until 10 ppm so really no one but the Celiac knows for sure in my opinion.

    It would have been great if they required ppm to be listed on labels but manufactures didn't like that provision and it was eliminated as a possible requirement.

  7. Not Celiac related just normal muscles cramping. If you have had surgery they cut the muscles in places so they can access the area to do the surgery and the muscles usually aren't as tight like they used to be can be explaination but it does happen to those who haven't had surgery. Also if they are in the lower part of your abdomen on either side could just mean you're ovulating.

    Unless they don't stop or you are having other sypmtoms like nausea, vomiting etc then don't worry about them.

  8. It happens but means nothing really. You've been drinking a lot juices which are naturally high in sugar could contribute but nothing to be concerned about. As for gallbladder and liver issues you won't have color in you poo those both have very pale cream or white colored poo. Been there with my gallbladder. Not fun and not something you would miss the symptoms for.

  9. Dermatitis Herpetiformis also known as DH. You need a skin biopsy which is done by a Dermatologist. If it's just on your back though I don't think it's DH. That shows on your arms and legs first not your back. DH lesions are more like little (or big) blisters.


    Mine are various sizes and while in control if I get gluten they stay on my legs. More gluten they start spreading.


    You can have a rash when you consume gluten but it's not necessarily DH that's why you need the biopsy. Get your primary doctor to refer you to the dermatologist. Once htat's done since you don't like this doctor if you can get one you like, who listens to you, and you can work with.

  10. Agree a week shouldn't make much of a differance but if you want to eat gluten go ahead. But you only need a half a piece of bread or a few crackers a day.  Also if you should have a skin biopsy for the rash to confirm dermatitis herpetiformis. Not hard to do it's done by a dermatologist and only takes a few minutes.

  11. Actually false negatives seem more common than false positives.


    I also have no idea about doing a endoscope on a child at two but you can call the gastroenterologist office at your local clinic and ask them. Or you can go online to either Twitter or Facebook and locater The University of Chicago Celiac Center and ask there. The person who takes care of those accounts may know and if they don't they will find out and get back to you. They're really good about that. I've contacted them many times with questions I couldn't get answers for from my local medical people.


    Celiac can reduce ones immune response do to the damage but once your daughter is on a gluten free diet and her system heals then she would have normal immune function again as long as she stays gluten free. 

  12. Yes, it is possible to test positive even if you had a negative test years earlier.  If you do have negative test results again do a gluten free diet trial and see if it helps.  Testing for Celiac is three fold 1 - Blood panel, 2 - Biopsy, 3 - Patient's response to a gltuen free diet. If 3 helps even if 1 & 2 are negative you may be nonCeliac gluten intoleratant. The treatment is the same however - a life long gluten free diet.

  13. No not a legitimate claim. He couldn't clarify because it was BS, he didn't know what he was talking about. It's common for a doctor to diagnosis IBS when it's really Celiac but the tests come out negative. Diagnosis is three fold for Celiac and all steps must be considered before making a diagnosis. Testing should occur BEFORE patient does even a short gluten free trial or false negatives can and do result. Steps for testing for Celiac 1- Blood testing checks for antibodies in your blood;  2- Intestinal Biopsy; 3- Gluten free diet trial. If 1 and 2 are negative but patient responds to diet trial patient could be Celiac but test results are false negative (happens a lot), patient could be nonCeliac gluten intolerant, or gluten sensitive. All require the same treatment - a gluten free diet. Do tests yet for the nonCeliac gluten intolerance but sensitivity may show up on allergy testing.


    You went gluten free for 8 weeks before doing testing? You got inaccurate results. Or you ate gluten for 8 weeks before testing?  If you'd been gluten free for a while then wanted to do testing you need to eat gluten daily for 12 weeks minimum before testing for it to be accurate. And even then your results could be false negative.


    If you did well off gluten go back off and see how you're doing. If you were gluten free then ate gluten again for the testing you did damage to your system and need to reheal again. Some have luck while staying gluten free they include probiotics daily, tonic water seems to help for the stomach problems, eliminate dairy and oats even gluten free ones for a while so your system can heal then reintroduce them in six months. And stay away from clueless doctors.

  14. Isn't it great? The first time I was there all the employees stopped and the Manager told the ones who were touching the buns to play statue and not move until she tapped them on the shoulder again. She and two others were the only ones able to touch anything until they handed my bag to me. It was like a well rehearsed dance. I was very impressed and made sure I let them know before I left and emailed the store and the corporate office letting them know how much I appreciated their efforts and the food. So nice to be able to go somewhere and not have to worry about being sick afterward.

  15. The typical reaction to being glutened is the same symptoms you would have had before going gluten free. Since each person is different their symptoms will be different. http://gluten-intolerance-symptoms.com/celiac-disease-symptoms/

    Since she is still having problems only at night there is something else going on. If she was glutened two weeks ago that should be out of her system by now. You could try giving her a small amount , about 1/4 cup, of tonic water (not the sugar free) having her sip it slowly in the evening to see if that helps. If not I would be calling her regular doctor because there most likely is something other than being glutened going on.

  16. You got incredibly lucky with a knowledgeable doctor. :)

    DXing you on the spot like that--because he recognized DH--is amazing.

    I know many members on here who had DH and NO doctor knew what the heck it was, some even refusing to biopsy as they requested, just to rule it out.

    Oh I had 2 skin biopsies both done wrong, the first dermatologist was taking part of the blister which just ruins the sample and the sample she was taking as "normal" skin was actually the one that should have been used for the diagnosis. The second time the lab saw something abnormal in the "normal" biopsy so I had more tests including a second set of Celiac panel, that's when she decided to bring in the older dermatologist who took one look declaring it DH, adding "tests aren't always accurate". The only reason I had to go through the gluten challenge last year is because in 1994 when a dietician I was working with caught my Celiac she told my GP to follow up, he refused so she told me to just go gluten free. My GP was one of those doctors who went to the University of Minnesota Medical School in the 60s and was given a whole 30 minutes on Celiac and told "you'll never see a case of it it's so rare" Wrong! So my current doctor insisted on the challenge but I have more medical people I'm working with who knew me before, during, and now after who all stood up to her telling her I can't eat gluten, it just tore my body apart in so short of a time. One was even worried I would die before it was all over.

    It helps to be informed and not be broken down by all the Nos of ignorant people. Doctors aren't Gods and they don't know everything but those who are willing to learn even from their patients are going to be more successful in all ways.

  17. People with IgA deficiency require a different version of the antibody tests. The tTG and EMA tests have IgG versions and these tests will then be accurate for someone with IgA deficiency. IgA deficiency is diagnosed when someone has a total serum IgA test and the results are very close to zero (less than 10mg/dl).

    Sounds like the doctor didn't know anything about Celiac or how to test someone who is IgA deficient. If he had called his lab they would have told him there are differenct versions.

    Here's a fact sheet she can print off and take in when she goes to have her son retested.


  18. First off you said you were eating gluten free for 6 months before your biopsies were taken. Don't be surprised if they come out negative. You have to continue to eat gluten containing foods until after the biopsy is done or you can get a false negative. I'm surprised your doctor did them wiuth you being already gluten free for so long. If they do come out positive then you are getting gluten from somewhere and you will have to go over everything you have been eating and all the foods you are bringing into the house. If your home is truly 100% gluten free you may also be reacting to another food. It's not uncommen for another problem food to show up once you get gluten out of your diet.

  19. Well the diagnosis for Celiac is supposed to be a 3 fold process not just one or two.

    1 - Blood tests

    2 - Biopsy

    3 - Gluten Free diet trial

    Even if blood work comes back negative you can still have damage that can be found only by biopsy if both those are negative but the patient is till experiencing symptoms then a trial of a gluten free diet should be made and if the patient respondes positivily to the diet they can be gluten sensitive which there is no test for and will not show up on biopsy.

    I did a 14 week gluten challenge with tests before and after and both times they came back negative even though I was so sick and my body was covered in blisters (head to toe, in my nose and private areas). My dermatologist had the oldest doctor in the clininc come look at the blisterng, he took one look, declaried it DH from his experience and told me to go back to gluten free and told my dermatologist to get me on Dapson that day.

    So yes you can still come out with negative tests and have the disease. I'd just stay on the diet unless you need medical documentaion (that's why I had to do the challenge) for some reason then try to find a doctor who will work with you. If you do go to the Gastro and you have the genetic test results back make sure to take a copy but keep the original for your own records. It should eb put in your file so if you have problems leter on they won't be repeating tests.

    This will be a for life change as well.

  • Create New...