faqs

Diag­no­sis
Food Labels
Gluten-Intolerance & Kids
Social Set­tings

What is gluten-intolerance and Celiac Disease?

  • I’m not one for recre­at­ing the wheel, so here is what the Celiac Dis­ease Foun­da­tion, a trusted gluten-free resource since 1990, has to say about the mat­ter:
    Celiac Dis­ease (CD) is a life­long inher­ited autoim­mune con­di­tion affect­ing chil­dren and adults. When peo­ple with CD eat foods that con­tain gluten, it cre­ates an immune-mediated toxic reac­tion that causes dam­age to the small intes­tine and does not allow food to be prop­erly absorbed. Even small amounts of gluten in foods can affect those with CD and cause health prob­lems. Dam­age can occur to the small bowel even when there are no symp­toms present.”

    Gluten
    is the com­mon name for the pro­teins in spe­cific grains that are harm­ful to per­sons with celiac dis­ease. These pro­teins are found in ALL forms of wheat (includ­ing durum, semolina, spelt, kamut, einkorn and faro) and related grains ryebar­ley and trit­i­cale and MUST be eliminated.

    A per­son seek­ing diag­no­sis MUST be fol­low­ing a daily diet that con­tains gluten for at least 4 weeks in order for test results to be accu­rate. Spe­cific anti­body blood tests are the ini­tial step in screen­ing for CD. Patients should always con­sult with a physi­cian to ensure proper diagnosis.”

What test should I request from my doc­tor if I sus­pect I may be gluten-intolerant?

  • Ask for a gluten or Celiac blood panel that should include a com­bi­na­tion of the fol­low­ing rec­om­mended blood tests, per the Celiac Dis­ease Foun­da­tion:

    Anti-tissue trans­g­lu­t­a­m­i­nase anti­body (tTG – IgA and IgG) –
    com­monly used whether or not symp­toms are present and the most sen­si­tive test avail­able
    Anti-endomysial anti­body (EMA-IgA) – highly spe­cific marker for celiac dis­ease
    Anti-deaminated gliadin pep­tide (DGP – IgA and IgG) – used when tTG or EMA is neg­a­tive and in cases where patient is IgA defi­cient
    Total serum IgA – used to check lev­els to exclude selec­tive IgA defi­ciency that results in a false neg­a­tive test
    Anti-gliadin anti­body (AgA – IgG and IgA) – not con­sid­ered sen­si­tive or spe­cific enough for adults, but used for chil­dren under 2 because tTG and EMA anti­bod­ies may be absent. The anti-DGP test is sen­si­tive in this group.
    Genetic blood test­ing of the DQ2 and DQ8 genes – does not diag­nose Celiac Dis­ease. Its largest ben­e­fit is that the absence of DQ2 and DQ8 essen­tially excludes CD. This test will tell you whether or not you have a genetic pre­dis­po­si­tion to Celiac Disease.

    A patient with pos­i­tive anti­body tests and a patient with selec­tive IgA defi­ciency are strongly advised to con­sult with their physi­cian regard­ing a small bowel biopsy (which is per­formed endo­scop­i­cally). A pos­i­tive small bowel biopsy is required to con­firm the diag­no­sis and assess the degree of dam­age to the villi in the intesti­nal lin­ing. Anti­body test results can only sug­gest the pres­ence of Celiac Dis­ease but can­not con­firm it. When anti­body results and biopsy are incon­clu­sive, or when the patient is on a gluten-free diet, genetic test­ing of the HLA (human leuko­cyte anti­gen) DQ2/DQ8 genes may be help­ful. The spe­cific genes DQ2 and/or DQ8 are con­sid­ered nec­es­sary for Celiac Dis­ease to develop. Since one-third of the pop­u­la­tion also has these genes, the pres­ence of DQ2 or DQ8 does not imply that the per­son will nec­es­sar­ily develop CD, rather, that they have a genetic pre­dis­po­si­tion to CD.

    Remem­ber, a per­son seek­ing diag­no­sis must be fol­low­ing a daily diet that con­tains gluten for at least 4 weeks.

    The onset of Celiac Dis­ease can occur at any time in a person’s life. Once a per­son is diag­nosed, fam­ily mem­bers should be urged to get tested as well.

What’s the dif­fer­ence between gluten-intolerance and Celiac Disease?

  • Celiac Dis­ease is the name of the dis­ease of gluten-intolerance. There is a lot of con­flict­ing infor­ma­tion about the dif­fer­ence between. Here is what the Celiac Sprue Foun­da­tion has to say about it:   “When work­ing with a physi­cian to diag­nose and/or con­firm celiac dis­ease (CD), three major steps are taken. First, a thor­ough phys­i­cal exam­i­na­tion is con­ducted, includ­ing a series of blood tests, some­times referred to as the Celiac Blood Panel. Sec­ond, a duo­de­nal biopsy is per­formed with mul­ti­ple sam­ples from mul­ti­ple loca­tions in the small intes­tine. And third, the gluten-free diet is imple­mented. When the patient shows a pos­i­tive response to the diet – symp­toms sub­side and the small intes­tine returns to its nor­mal, healthy state – the diag­no­sis of CD is confirmed.”As for me, I sim­ply did the genetic test and the food elim­i­na­tion diet. My doc­tor didn’t rec­om­mend the duo­de­nal biopsy. Some­thing about “if it looks like a duck and quacks like a duck…”  Plus, I had already been off gluten for over a month and was totally unwill­ing to go back on it for another four weeks of pain and suf­fer­ing in order to get a for­mal­ized diag­no­sis. What I find nowa­days with physi­cians and with my own research is that a food elim­i­na­tion diet iden­ti­fy­ing the offend­ing ingre­di­ent is con­sid­ered diag­nos­able as “gluten-intolerant”. But it’s really impor­tant to work with a physi­cian to deter­mine if you are truly gluten-intolerant or you have some­thing else both­er­ing you. Here’s a great arti­cle that fully explores the sub­ject of obtain­ing a biopsy or not.

Does my fam­ily have to be tested if I test positive?

  • Your fam­ily absolutely has to be tested. “First degree rel­a­tives (par­ent, child, sib­ling) have a 1 in 22 chance of devel­op­ing celiac dis­ease in their life­times; in sec­ond degree rel­a­tives, (aunt, uncle, cousin, grand­par­ent) the risk is 1 in 39. Only life­time screen­ing can help fam­ily mem­bers reduce the long term impact of celiac dis­ease and facil­i­tate a quick diag­no­sis. They learn that reg­u­lar anti­body test­ing is nec­es­sary because celiac dis­ease is a genetic con­di­tion and could appear again in the fam­ily at any time.” Here’s the com­plete arti­cle from the Uni­ver­sity of Chicago, Celiac Dis­ease Cen­ter. Remem­ber, the genetic test­ing is key to deter­min­ing whether your fam­ily mem­bers are genet­i­cally pre­dis­posed to this condition.

Why does my fam­ily have to be rou­tinely tested? Can a per­son develop celiac or gluten-intolerance at any time or later in life?

  • The answer is yes, and it’s part of the lat­est infor­ma­tion about celiac dis­ease and gluten-intolernace. Here’s a great arti­cle from the Wall Street Jour­nal which dis­cusses late-onset celiac. This arti­cle greatly par­al­lels my actual expe­ri­ences. For exam­ple, I find my body doesn’t dis­tin­guish between phys­i­cal and emo­tional stress. For me, stress is stress. And my symp­toms always became worse and more pro­nounced after events like child­birth, a phys­i­cal injury or surgery, the death of a loved one. I sus­pect things like hor­monal changes in ado­les­cence and mid­dle age may have some impact as well, although I have not yet read any research on that. And it’s worth repeat­ing, remem­ber, the genetic test­ing is key to deter­min­ing whether your fam­ily mem­bers are genet­i­cally pre­dis­posed to this condition.

So all I have to do to be well is to fol­low a gluten-free diet?

  • Because gluten has been dis­rupt­ing your small intestines and diges­tive sys­tem, there is an excel­lent chance you have vit­a­min defi­cien­cies. Check with your doc­tor to make sure you’re not low on Iron, Vit­a­min D, Sele­nium, Cop­per and Magnesium.

How can I make sure my child won’t be served gluten at school at a class party?

  • Unless you are phys­i­cally present, you can’t be sure. I’ll never for­get Read Across Amer­ica day at my son’s kinder­garten class when the kids got to eat green eggs and ham. One of the par­ents thought pan­cakes would be a nice addi­tion, so she made up a batch and unknow­ingly served my son. I try to attend as many of those school events as pos­si­ble, but I’m a work­ing par­ent as many of you are. So the stash box was born for those fre­quent moments when the teach­ers hand out a treat. Mine is a fairly siz­able clear plas­tic bin packed full of Nana’s indi­vid­u­ally wrapped banana, choco­late and gin­ger bars, along with mini Hershey’s choco­late bars and Ener-G pret­zels. For class par­ties, I keep a stash of Pamela’s cup­cakes in my freezer at home and send one in with him in the morn­ing. And when I’ve got the time, I offer to bring cup­cakes or cook­ies for every­one so that my lit­tle guy isn’t always the odd-man out. This year, my son is in a class with a lit­tle boy who has a peanut allergy and the teacher agreed that pop­si­cles will be the only treat served this year, which is a great all around alternative.

How can I bring my own food into movie the­aters and amuse­ment parks when they have a no-food policy?

  • Here’s where you’re fam­ily prac­ti­tioner can really help out. Get a Doctor’s note and present it to whomever is ques­tion­ing you about your food. It’s help­ful to call ahead and let them know about your sit­u­a­tion. Remem­ber to take the name of the per­son you’ve spo­ken to so you can name drop at the entrance if you need to. But take heart, places like Dis­ney­land have lists of gluten-free estab­lish­ments within the park on their web­site. Ball­parks are also slowly pro­vid­ing gluten-free, like our own Petco Park here in San Diego. But really, the best way to deal with these types of sit­u­a­tions is to be author­i­ta­tive and extremely polite.


How do I tact­fully ask the host of a din­ner party what they’re serv­ing so I can be prepared?

  • I find that actu­ally ask­ing is the hard­est part. No one wants to be a high-maintenance guest. But when peo­ple real­ize there is an allergy or intol­er­ance involved, I find they are very recep­tive. I offer to bring my own food so as to not incon­ve­nience the host. If they insist on accom­mo­dat­ing you, be care­ful. I’ve had one meal in many where I didn’t get sick after­wards, because really, you can’t expect a gluten lay per­son to know about not using the same tongs when turn­ing the meat on the bar­be­cue. So if they do put food aside for you, thank them and then help with the prep if you can. I always thank my host, telling them how great it is for me to eat some­one else’s home cooked meals. And I always bring a gift because I know aller­gies for a host can be dis­rup­tive to their evening. If the set­ting is more casual, offer to bring a side dish or appe­tizer that if gluten-friendly, then you’ll know you have at least one thing to eat. And if you can’t man­age any of the above, you can take the least prefer­able route and eat before. Really, your con­di­tion is just a great excuse for you to enter­tain more.


Read­ing labels can be so con­fus­ing because gluten is some­thing a hid­den ingre­di­ent. How do I nav­i­gate food labels?

  • Food labels can drive a per­son CRAZY. I’ve found the best gen­eral rule of thumb for EVERYONE, not just those of us with gluten-intolerance, comes from food author Michael Pol­lan, author and con­trib­u­tor of such must-reads as Omnivore’s Dilemma and Food Inc. He says the less ingre­di­ents the bet­ter. If your third grader can’t pro­nounce it, don’t eat it. And if your grand­mother wouldn’t rec­og­nize it, stay away. I think it’s excel­lent advice because so much of what plagues those of us with gluten-intolerance is tucked away and read­dressed as “mod­i­fied food starch” or “nat­ural fla­vors” – seem­ingly innocu­ous ingre­di­ents that con­tain a few words that remind us of famil­iar food. Celiac.com has a good list of foods to look out for which typ­i­cally may con­tain gluten.Identifying gluten when eat­ing out can prove par­tic­u­larly tricky. Here’s a great list of restau­rant terms that equal gluten. Some of the best news is that in 2006, the Food and Drug Admin­is­tra­tion (FDA) intro­duced the Food Aller­gen Label­ing and Con­sumer Pro­tec­tion Act (FALCPA), which man­dates the dis­clo­sure of eight food aller­gens in the ingre­di­ent state­ment: Milk, egg, wheat, soy, peanut, tree nuts, fish, and crus­tacean shell­fish. So when you read a label that says, “Con­tains milk and soy”, by it’s omis­sion, gluten is not present. Remem­ber, gluten will not actu­ally be listed. It will be listed as “wheat.” This is a great vic­tory for peo­ple with aller­gies, how­ever, there are still some gray areas.