LauraTX

Wheatless, while I understand your condition is real for you, you cannot apply your experience to everyone with Celiac disease. The link you post says there is anecdotal evidence.... anecdotal evidence is the lowest on the totem pole of the scale of reliable scientific information.   Also, the most specific example they give is of someone who is a farmer and is dealing with wheat in an enclosed space all day.  Of course it was getting into their mouth in that situation. As in the case of odors, those molecules that are entering your nose are not large enough to contain gluten. Smelling the odor of someones beer is very different than walking into a bakery where they are dealing with flour all day and it is settling all over everything and in the air right after they did some flour mixing.

So, overall, while you have these symptoms, please do not go around lecturing everyone else that they just haven't figured it out yet that they are as sensitive as you.  Your case is unique, so please treat others with respect when they do not have the same issues you do.

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The University Of Chicago Celiac Center recommends a half slice of bread per day for 12 weeks before blood tests.  So you can definitely cut down from those 4 slices.

I have split this into it's own post since it went off topic from the discussion from the original thread: https://www.celiac.com/forums/topic/111474-cooking-with-flour/

I don't quite understand your post. I am blood positive,  as well as skin tested for extra sensitivity. There are many articles (and posts on this forum), that prove quite the opposite of what you are saying. You may be getting a small reaction despite thinking you are fine, are are just lucky enough to not be very sensitive, and are more like someone with an intolerance. 

 

"Wheat flour can stay airborne for many hours in a bakery (or at home) and contaminate exposed preparation surfaces and utensils or uncovered gluten-free products. Likewise, foods not produced in a gluten-free environment have the potential to be contaminated with gluten."."

From Open Original Shared Link

 

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Check the google results : 

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Take a look at the thread about Horse feed, even for someone who doesn't air-test or is hyper sensitive like me, it's most definitely a proven danger to people with Celiacs to be around places with flour, or flour-like gluten products.

 

How long have you had it? Less than 2 years and I can understand your perspective, as people who are newer to it don't experience these kind of issues (usually aren't sensitive enough), or just aren't aware enough to notice them. 

If you would like to continue this discussion, please start a new thread in the super-sensitive section.  Please avoid arguing with and speaking down to other members, and in this case, the person you are conversing with is one of our most helpful members.  The links you post all refer to extreme situations such as working directly with wheat, not the ones you are describing with your everyday life.  Your experience is not that of a typical Celiac so please keep these discussions in the proper area.  

If you are that sensitive it is probably a good idea to not eat anything that wasn't prepared just for you, so I would stay away from a salad bar.  People can be messy and cause major CC in those types or arrangements. Gluteny kisses can definitely get you.  Also, if you are still having problems, you may want to have your whole kitchen gluten-free for a while to see if that helps.

Given that the research was affiliated with cyrex labs, and the above linked article is poorly sourced and includes links to purchase the cyrex labs tests.... I would proceed with caution.  Lots of people write very scientific-sounding things and post them on the internet.  If you would like to restrict your diet further, then feel free.  Otherwise, I recommend not doing so as it can make your life harder and not necessarily provide any benefit.

I feel the same way too!  Glad to have you on here as well, and glad your pregnancy hormones are taking you onto the happy side of the hill, at least for now, lol!!

I mean, I am a germaphobe and would probably react more than the average person, but if it wasn't someone like my husband, I would TOTALLY flip out if someone got their spit in my mouth. LOL.  So, ya know, I would mentally overreact for sure.  I would probably make myself sick thinking about what pathogens that person had in their mouth that I was going to get sick from.  So don't feel alone there, sometimes you can never tell what exactly makes you feel poorly, either.

Ah yes, you are probably like my husband who has to bend down to wash his hair in the stand up shower, LOL.  Lots of us who don't have faith in ourselves keeping our mouth shut while washing do use gluten-free shampoo and such for good measure.  Well, I think you are doing the right thing by treating your condition as assumed Celiac disease and an actual wheat and soy allergy since you are so sensitive. There are a good number of people here who have to avoid soy, too, if you need info on products and such post in our other food intolerance section and you should get some good answers.  Hopefully you can get some good support here for coping, and be all "lalala don't mind me just bringing my own food" like we do

Welcome to the forum!

So, I read all of your posts, so you have Celiac disease and a wheat/soy allergy?  That is definitely a lot to deal with.  Having the actual wheat allergy on top of Celiac disease definitely complicates things.  While there are some people with Celiac disease who feel they get ill from just walking past the bakery at the store (you can converse with those people exclusively by using our super sensitive section, which I recommend for any other airborne conversations), the majority of Celiacs do not have symptoms to that degree, since gluten has to get into their mouth to cause a problem.  So while a person with Celiac disease can handle, say,  a piece of gluteny bread, and wash their hands and be fine... someone with a topical wheat allergy obviously can't.   Do you live in the US?  If you don't, go ahead and put that on your signature line (along with something saying you have an actual wheat allergy) so we can tailor our answers to you.  Most product info here on the board is for the US, although we have a good number of Canadian and other international members who give great information.

Not being able to participate in the societal norm of having food-based gatherings can be a huge drag on your life.  My family is the "Omg you need to eat something!" type and even though they mean well, I know they feel a little slighted when I leave the gathering early to go home and eat.  A lot of us will bring our own food to things, but given how severe your allergy is, that may not be the best option if you can't even go somewhere.  But if there is a place you do feel safe going, bring your own food and don't apologize.  I actually keep a doctor's note for when I go to places where outside food isn't allowed in case they give me trouble.  

You just have to create your new normal, invite others in, and sadly, leave behind those who don't feel the need to do simple things to not make you sick.  If they aren't willing to do something so simple to avoid hurting their friend, then they aren't a real friend after all.  Leaving behind old hobbies and having your life flipped upside down by illness can be a very bumpy ride in life.  Some of us here have talked with counselors to help cope, especially when friends and family are extra isolating, other illnesses are involved, and depression sets in.

I actually understand the mask wearing thing.  I have a Primary Immunodeficiency disease, which means I naturally lack part of my immune system.  If there is a flu going around or I am someplace with huge crowds, and when I fly on airplanes, I keep a mask in my purse and sometimes wear it to protect myself because those germs get to me much easier than the average person.  People will freak out and be so rude, so I only wear it if I feel it is absolutely necessary.  Luckily I work from home,  keep my distance from strangers, and don't do it very often.  Especially when the ebola thing was big news, so many ignorant people out there I wouldn't dare wear it even though it was flu season.  LOL  I don't get out much, either.  Haha.

Moving away from your current area may be something to put off for a while so you can maybe work on trying to increase your level of happiness so you don't end up isolating yourself and increasing levels of depression.  However, if you feel that your immediate area is a source of stress and illness, then definitely get out of there.  I am around the same age as you, and I also understand the difficulty of avoiding comparing yourself to other people, having to give up a successful, lucrative career in the medical field that I worked so hard for.  Remember that their relationships, jobs, and families that look perfect from the outside are causing them to probably be stressed out, that there is a 50% chance they will be divorcing, and their kids are not the perfect angels they make them out to be on social media.  Try your best to learn to love yourself and your imperfect life, and be grateful for what you have and what you can do.  That, of course, is a struggle on a daily basis, but if you can increase the number of good days and decrease the number of bad days, then that is winning

Welcome to the forum!

So were you diagnosed as Celiac and went gluten-free three months ago?  If so, you are on the track to healing, but the healing may not be complete yet.  That just takes lots of time and we have to hurry up and wait for it.  The facts that your headaches have lessened definitely sounds like they were related to the untreated Celiac, and that further healing may help them.  If Domino's is the local pizza place you are eating at, that is undoubtedly where you may be getting cross contamination in your diet from.  Dominos has a statement on the pizza box and on their information that their gluten-free pizza is NOT for people with Celiac Disease, because of the high amount of gluten all over the place in the restaurant they cannot say the pizza as a whole is gluten-free.  They just use a gluten-free crust and smear gluteny contaminated ingredients all over it.  So, unless you personally know someone there who is going above and beyond for your specific case, they are likely not taking special precautions and using the same pans, sauce, spoons, ingredients, and gluteny hands to prepare that.

Wendy's can be a safe place to eat, but like any fast food place where the staff can be iffy, you have to watch yourself.  Ordering any item where they have to leave off the bread, etc that requires special instructions is very prone to them potentially messing it up.  Hopefully you are ordering off their gluten-free menu and not getting anything that is fried, as their fryer also fries things with breading(gluten) on them, and those items are all definitely NOT gluten-free.  I only eat at Wendy's when it is the only option on a road trip, and get a still-wrapped plain baked potato and a bowl of chili.  I have had them screw that up, even.  So, if you want to let us know what you are ordering and we can give you some tips, but overall it is best to severely limit eating out until you confidently feel like you are healed.  And after that, eat out with caution.

Wendy's uses a common cutting board, condiment spoons, and fryer.  So anything like grilled chicken that is cut on the same board as breaded chicken, fries that are int he same oil as breaded stuff, and condiments that have spoons in them that were used to smear that on a bun.... sadly are no-gos.  Open Original Shared Link, and anything with a square or moon next to the name is basically a no-go unless you feel that you can get them to use a clean knife, don't cut it, or other special instructions.  A lot of Wendy's can't even leave the onions off the cheeseburger so generally that is not going to happen safely.

Finding safe places to eat, especially pizza, can be hard.  Some national chains that can do it well are Mellow Mushroom, California Pizza Kitchen, some Pizza Huts, and BJ's Brewhouse.  There is also a website called Open Original Shared Link (they also have an app) and they have listings of places that have gluten-free menus.  Pay close attention to the reviews on there, though, because not all the places they list are safe for Celiacs and free from cross-contamination.  Also, even if a restaurant has gluten-free offerings, you do still need to do some questioning every time you go, and alert them to your eating gluten-free because it is medically necessary.  Even with all that, some people do not take us Celiacs seriously and eating out can always be a crapshoot on if you will get sick that time.  (That is why it is best to limit it when you are first healing after diagnosis, otherwise it will take a very long time to heal, if ever.)

Also, check out our newbie info 101 thread here for some other good information we have compiled that may help you figure out where you could still be getting gluten in your diet.  If you are going to feed gluten to family members, there are some special precautions to take in your kitchen to keep you safe.  Otherwise if you are going to make your kitchen gluten-free, you will want to pick up a few new items that just can't fully be cleaned of gluten, like the toaster, colanders, and crusty baking pans.

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I didn't have noticeable issues being around airborne wheat until about 1.5 years after my diagnosis. So it is possible you are having small reactions but not noticing it when they cook.  You also may be one of the lucky people that just has a slight intolerance that will be able to cheat occasionally, but if you have a blood test positive for celiacs you are probably more sensitive than that. 

 

Since you are new to the disease, here's my .02 to watch out for : Caramel coloring is made of wheat, avoid Soy Sauce unless it's specifically gluten free, check ALL of your hair products for wheat, or hydrolyzed wheat protein (I got VERY sick for a month from using shampoo with wheat in it, about 1 year after my diagnosis). Sushi rice, also can contain gluten. Pet foods are notorious for having gluten, I've seen dog, cat, fish, and chicken feed all contain it as major ingredients. Look out for Malt flavoring in certain cereals and foods as well.

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Welcome to the forum, Wheatless32!

This is actually a pretty good article.  Not what I expected from the headline. 

According to their website they have a chocolate muffin mix as well, haven't seen that one.  

TL;DR: Their blueberry muffins are tasty, cheap, and according to mfg they test finished product and run on shared equipment with very thorough cleaning/QC protocols.  I feel okay with them, but super sensitives may not.  Would be a great thing for kids.

Stubbs BBQ sauce and Salt Lick BBQ sauce are gluten-free.  Salt lick also has really good salsa.  They may be local to the Texas/southwest area but darn tootin' they are good!

Welcome to the forum!

RMJ gave some very helpful info above.  The best way to get additional pieces to the diagnostic puzzle would to be to go see the GI and get an endoscopy done.  Make sure they get at least 6 biopsies as recommendedOpen Original Shared Link.  That way they don't miss anything as damage can be patchy, and you definitely need something conclusive.  I don't think the allergy shots are known to affect the Celiac bloodwork but it is always good to check with your allergist about that.

Also, have your regular doctor pull a total IgG in the meantime to ensure the IgG associated results are not a false negative.  (That is unlikely but with goofy results good to double check)

Edit: Spelling

If you are trying to do it and can't afford the whole diagnostic workup, Karen's suggestions of a public clinic or research hospital are good.  If you can't find something like that, you could do one blood test at a time to let the results trickle in, and you may get something indicative enough of Celiac disease that you are comfortable calling it that without an endoscopy.  However, if you can manage any way to get the full diagnostic workup and endoscopy, that really can help you know if other things are going on, especially if it turns out to not be Celiac disease.

You could also just trial a gluten-free diet now like Bartfull said.  If you are really itching to know and your financial situation allows in the future, it will be a 12 week period of eating gluten.  There are a good number of people here on the forum that did that, and feel no need to go get formally diagnosed.  Just try to weigh the benefits and decide what is best for yourself.

Agreed with the above.  Clean any gunk out of crevices and you are good to go.  No need to replace pots and pans unless they are seriously gunked up and can't be cleaned.

Yeah, that isn't gluten coming out.  It may be mucus, which can happen around stool when you are very constipated as it irritates the GI tract.  Probiotics alone are probably not enough for the constipation.  Take a look at the links below for some ideas on foods that may assist in loosening things up gently.  Also, a fiber supplement or even foods like prunes can help.  Eat your fruits and veggies, limit things like processed foods, dairy/cheese, and choose whole grains over white grains.  For example, brown rice and brown rice pasta over their white rice counterparts.  If you don't get a lot of fiber in your diet, do add it gradually, as the initial phase of getting out the old leftover constipated stuff can cause some discomfort.  Prunes are my magic cure for chronic constipation (we call it "C" around here, lol) and if you want to try that out, just eat 1-2 a day, then you can kind of go by how easy the go is to figure out how many is a good number to eat each day.

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LOL!!!!

Heard all of these, kinda sad thing.  haha

Yes, there are people with this genetic type that have celiac disease.  Go to the main page of the forum and search "one copy of dq2" and there will be many threads to read through that may give you the information you need.

Yes, you can have one copy of the DQ2 gene (referred to as heterozygous) and get Celiac disease.  That gene is not one where you have to have two copies for it to present itself, so having one means Celiac can be a possibility.  Of course, having the gene alone does not mean you have Celiac disease, you do need to get other testing done to see if Celiac disease is active.

That is also a good idea what Bartfull said.  I tell my husband he can have his gluten outside of the house, lol.  And he does, when we go out.

Pamelas is my other favorite pancake mix!   For some reason the recipe on the bag seems to be way too much milk for thick, fluffy pancakes.  Hold back like a third of it if you like your pancakes thicker.  I really like the taste of those the best.

I found an ebook that has spared me much misery in the way that there are ingredients I never would have guessed would cause inflammation and pain due to its gluten content such as caramel coloring (found in colas). The book is Celiac Disease Safe/Unsafe Food List and Essential Information by Jaqui Karr C.S.N., C.V.D. I am new to this too but have learned that even minute amounts have a profound effect and I have to be extremely cautious. I have this book on my nook and take it with me to the grocery store. I feel the best when I only eat fruit, vegetables and chicken (chicken that has not been juiced or injected that is) and no grains of any kind. Beware of salad dressings many contain hidden gluten ingredients I like Drews or else just a spritz of olive oil or lemon juice and salt. Another thing I do is to keep spreads, dips and peanutbutter separate from my husband after seeing him make a sandwich and double dip (lol he insists he doesn't but he does) and it was a source of contamination. Good luck to you I know I have been helped a lot reading from this forum.

In the USA, caramel coloring is made with corn, therefore does not contain gluten.  There are many other things in processed foods that may cause digestive distress, but it is not from that ingredient, as it does not contain gluten. Here is a great index of ingredients that may be more reliable for your use: Open Original Shared Link