Korwyn

Along with the other questions above, also consider that lipsticks and lip balms are NOT gluten free. I can't kiss my wife if she has put certain lipsticks on - which has led some running jokes among us.

Having done the GAPS diet for several months, I do think that there may be some misunderstanding as to the purpose and/or application of the diet. And while simply following the GAPS diet in and of itself is not automatically gluten free (vinegar for example may or may not be gluten free) it can easily be made gluten free.

All of that said, what symptoms are appearing that cause her to feel she is getting glutened? And if she works outside the home, could it be happening at work? I have to be very careful preparing and eating my lunch at work as I've had co-workers accidentally fling crumbs across the table into my food, or one time I saw someone pass their freshly toasted bread slice over my coffee cup which I was getting ready to fill up.

I been gluten free for since October. Every single day my stomach still hurts after eating. Could it possibly be anxiety? I can feel (internally, not with my hands) that when I lay down the bloating is right on top of my stomach so I'm guessing that's my intestines. I had a negative blood test, a positive endoscopy, and genetic testing came back that's I do carry the genes for celiac. If it's celiac than why isn't my gluten free diet working?? I am not getting cross contaminated I shop at whole foods and I specifically buy only products that's are specially made gluten free. Right now I just ate a gluten free bagel and my intestines feel like someone rubbed them with sandpaper and i feel like there is a giant ball slowly inflating. I look like in freaking pregnant half the time. I accepted this crap but I'm getting very angry with why i can't feel better. I can't live my life like this anymore. I don't know what else to do my doctor just tells me to stay on the gluten free diet. I can't work and i don't even think you can go on disability for this... I have to support my son i can't have my fiancé do everything. Anyone else ever feel like this even on the diet. Can cigarettes cause this? Can stress. If anyone can relate to this please help.

Hi Heidi,

Very often people with Celiac will have developed other intolerances as a result of the untreated celiac disease. As peoples bodies heal, for many, these intolerances may fade away after a significant time avoiding the trigger items. Does this only happen with grain based products, or things with yeast in them? Have you tried an elimination diet?

You people!!!

If you were to bother to educate yourselves and read all the science I have read but can't be bothered to look up right now, you'd realize that NONE of your B12 remedies will work UNLESS you expose the tablets to the full moon as close to the spring equinox as possible AND you can only purchase them from the site that charges you twice as much, but guarantees that they've been chanted over to remove residual evil from the manufacturing process (touching metal and all that).

No wonder none of you are getting any better.

I thought there was a goat sacrifice involved.....

I was a little taken aback by your post. While there have been some occasional heated discussions which the mods are pretty good about shutting down when they become entirely unproductive (sometimes heated discussions can be beneficial), I have found this forum to be one of the better, more rational open-subscription (anyone can join) forums I've seen in my 25+ years out in cyberspace. And one of the best at self-policing that I've ever seen.

In the last couple years here I've seen ups and downs in the tone of the posts and quality of information (occasionally contributing to the down side myself I'm sure ), and while we may (or may not) be in a down cycle I'm guessing there is more to your post than meets the eye. So...what's the scoop? What are you seeing that's bothering you?

The blood tests are known to have a high false negative, so I would suspect that 'home test' kits would have an even higher false negative and be highly suspicious. I would certainly see if you can get a complete blood workup which should consist of the following tests:

Anti-tissue Transglutaminase Antibody (tTG)
Anti-Gliadin Antibodies (IgA and IgG)
Total Serum IgA
Anti-endomysial antibody test (EMA-IgA)
Deamidated Gluten Peptide (DPG-IgA and DPG-IgG)

As far your question if I have ever known or heard of a similar case, yes. And you will probably find out from many of them first hand very soon.

This is interesting question! (+1) I never thought about an upside to being super sensitive. I like these kinds of challenges to my thinking habits.

So...one positive thing that I can think of is that I don't seem to agonize as much as some people do over "can/should I risk trying this or not?". It is produced in a shared facility or shared house (gluten-free with non-gluten-free family living/eating there) I don't eat it. If I have a question about it, I generally just don't eat it. So really the only time I worry much about it is if I'm eating out.

I don't each much processed food at all, but one down side is actually the flip side of the above. When I do want processed foods (crackers, cereal, snacks, etc.), a lot of the resources others can eat from (Trader Joe's, Whole Foods) aren't accessible to me. So I have a much more limited availability of commercially prepared and packaged 'snack foods'.

There is a grieving process that many of us seem to go through. Some go through it right away, some not for several months. It really is okay. About the liver and onions (mmmmm.....I love liver and onions) I use 1/3 white rice flour, 1/3 sorghum, and 1/3 millet (all available at most whole foods (not the chain) stores). For gravy I use 1/2 potato starch and 1/2 potato flour since neither my wife nor I can have corn starch.

I make our own gluten-free bread (Breadman Pro bread machine rocks!), and I make our own gluten-free croutons as well. That's how I make stuffing for Thanksgiving and for Christmas dinner. Learning to cook gluten-free is an interesting adventure. I've cooked since I was about 8 years old, and I cooked for a living for a number of years. So having to relearn how to cook after 30+ years of cooking was not the easiest thing in the world. But I figure if some friends of ours who own a catering business could successfully convert their entire business to gluten-free, without anyone knowing, because they had to for their own health, and get BETTER reviews from people after going gluten-free, it certainly must be doable!

we'd all do each other in!

Clue (Celiac Edition)
In the kitchen,
By all of them
With the loaf of bread

I have had good success with Durkee, Spice Islands, and McCormick. I cook a great deal and for groups of 8-10 people on occasion, so I go through a lot of spices. I tend to stay aware from any pre-mixed seasonins from anyone but those three.

It is certainly possible to have an intolerance to multiple things (gluten, dairy, soy, corn, etc). One or more of them may mask or hide the symptoms of the others. When I was diagnosed with Celiac Disease, I felt much better for a couple weeks after removing gluten. Then I started to feel worse and some symptoms started to return. Eventually I figured out that I really was intolerant of Casein (the cow's milk protein). I removed that and the same thing happened. Better for a while, then worse. Removed Soy, and voila! So all three were already present, but they had some symptom overlap that was causing confusion for my body.

I just found out I have Celiac last year, and was told to go on a gluten free diet...I am having a horrible time adjusting...Not only am I having problems because everything costs so much, I feel like I am putting a burden on my husband and the kids because I am spending money that he earns really hard, and he never signed up for this...I am a stay at home mom of two kids, and am not working at the time because daycare for them would be just as much as I make...I feel horrible about this, and even though my husband is telling me that all will be okay, I feel like a failure, like it's all my fault, and that he didn't sign up for this and he should be punished because of this...How do you deal with the guilty, and the cost, and everything else?...I just don't know how I will be able to live like this...

I'm so sorry you are feeling overwhelmed. I understand because I think everyone has gone through that. I will tell you what got me through the first months. Reading 'Gluten-Free for Dummies', and going to a whole/raw foods diet. I couldn't cope with all the changes, trying to make our home gluten-free, what could I eat, what couldn't I eat, what about what my wife was eating, what about the grand-kids, worrying about cross-contamination, etc. I couldn't handle the stress. So I started eating only meats, home made salads, and fresh fruits. That way I knew everything was safe and I could start dealing with all these other issues one at a time. This also helped with the cost. Prepared gluten-free foods are expensive. Eating only raw/fresh/whole foods gave me time as I had to relearn how to cook and bake gluten-free which took some time.

Now to address some of the other things you're dealing with:

You are working. Full time. You are a MOM and a wife. That is TWO full time jobs. Your contribution to the home is immeasurable, because frankly, it wouldn't be a home for your kids without you. It sounds like you have a supportive and loving husband, and I commend him for that. As a husband and father, I will tell you that yes, he did sign up for this! When he said, "in sickness and in health, ... until death do us part" and "I do!", yes he did. My wife has had to deal with some issues in the last couple years, some illness, some major surgery, etc, and it never once crossed my mind that I didn't sign up for this, because I did. And I'll bet your husband feels the same way. If you can listen to what he says, and turn off the filter in your head that is processing everything he says through what you think he really feels you may realize he means exactly what he is saying.

I'm going to ask you a question: Why do you feel guilty for being healthy so that you can be there for your children and husband? Do you feel selfish for having to focus on yourself instead of them? Would it really benefit them for you to focus first on them, but have you sick, malnourished, with any of the hundreds of conditions and diseases untreated celiac disease leads to or predisposes you towards? Because then they would be caring for you, worrying about you, helping you, treating you, and so on.

Caring for yourself first, to make sure you are healthy in mind and body is the best thing you can do for them. Wracking yourself with falsely assumed guilt over this DISEASE, which you did not choose is doing them a great disservice and in my mind isn't fair to them or your. It devalues the love and concern they have for you. Because they love and care for you, they want you healthy and not sick and suffering. Not to mention that guilt (especially false guilt) will eat away at you, ultimately leading you to resent and reject them because you will convince yourself that is how they feel about you as a result of this. I'm oversimplifying this mental process a bit and making a few generalizations to make my point.

Do you attend a church or synagogue? Do you have access to a counselor of any kind who might be able to talk with you in a more trained capacity? Can you find a Celiac or GiG support group in your area? It sounds like you are trying to shoulder this entire thing yourself and that isn't healthy. I know you are reaching out to us here but there is something to be said for a physical shoulder to cry on.

BBQ Turkey, with gluten-free Dressing
Garlic Mashed Potatoes (with Raw/Fresh Cream)
Cranberry Sauce
Green Beans with Bacon and Sauteed Onions
Pumpkin Pie with homemade french vanilla ice cream (made from Raw/Fresh Cream)

Misc other stuff.

I have been researching and reading so much but what does "super sensitive" mean to you? There doesn't seem to be medical definition

Dilanttesteph pretty much nailed it IMO. I consider myself super-sensitive as I will react to many things produced in a shared facility. If it is produced on the same equipment, based on the last couple years response, I'm guaranteed to react so I don't even touch anything produced in a shared facility. Which is why Trader Joe's is out for me.

Where do celiacs who don't react to anything but something like a piece of cake fall on that spectrum?

Nuts.

My personal opinion is that that celiac would fall on the "playing with fire" part of the spectrum

What if we react to mushrooms?

A number of my symptoms refused to resolve until several things happened:

• We made our home entirely gluten-free - including our pet food and cookware
• I went on a whole/raw foods diet only for about 8 months.
• Eliminated casein and all cow dairy products from my diet.
• I eliminated all grains and grain based products.
• Verified all our viatmins/supplements/meds as gluten-free or found gluten-free replacements.

Each one of these steps produced a marked improvement.

There is a huge amount of CC in grains and because of the way the labeling requirements are for grains if a product is a made with a non-gluten grain (e.g. sorghum or soy) there is often no testing done on the end product as there is a assumption that the sources are gluten-free. So if the original grain is CC (38% of soy samples were CC above 200 ppm) then end product is NOT gluten-free even if it is made with 'gluten-free' ingredients in a 'gluten-free' facility. We ship grains from our port here and I can see why the CC is so high. They use the same conveyors to load/unload all the grains. AGP here handles wheat, soy, corn, and a couple others (I don't recall what) and they load/unload/process the rail cars and ship holds with all the same gear. I am still 99% grain free and will remain so. What grains I do eat (rare) are usually rice (never white rice), quinoa, and occasionally some flours for breading which tested low on CC (brown rice, amaranth, quinoa are good choices).

The whole foods diet consisted of carefully selected fresh (uncooked) veggies and a very limited amount of fruits/berries, and coconut oil. The veggies we consumed in the form of a 'green drink', processed in a blender with fruit, coconut and fish oil, and coconut milk. The veggies were selected with a focus on vitamins/nutrients I knew I was low from lab testing (D, K, E) or suspected I was low in from presentation of symptoms (B12/6, Omega 9). I also tested low (Sodium, Magnesium) or showed symptoms (Selenium, Copper) for a number of mineral deficiency. Oils are required to absorb fat soluble vitamins (D,K,A,E) so low fat diets can be deadly to someone with malabsorption issues. Meat was consumed cooked only in coconut oil or bacon drippings, and I added liver (chicken and beef, organic grass-fed only) as it is arguably the single most nutrient and mineral dense food (usda.gov nutrition database) available to us. Also, being meat it does not depend on proper gut flora for digestion in the same way veggies and fruits do which can be critical if you suffer from intestinal dysbiosis (bacterial overgrowth or missing 'good' bacteria which are required for proper digestion and absorption of plant/carb based nutrition).

I resisted making our home gluten-free at first, but after several times of CC from using cutting boards, cookware, baking stones, and so on, we were forced to do it. This alone resolved a number of other lingering symptoms.

Vitamins/meds: This is one case where I might strongly press some people to pursue a diagnosis as it wound up being necessary for my insurance to cover a non-generic med. The generic was not gluten-free, the non-generic was. They didn't want to pay for the non-generic. Fortunately I'm no longer on any meds for anything (taking supplements for hypo-adrenia), but this is still a concern for our vitamin supplements. I'm on 8,000 IU/day of D3 still.

* Edited because I left out a bunch of stuff as usual that I didn't catch until AFTER hitting 'post'

Has anyone ever had a negative result from Enterolab? Just asking.

Yes. As I've said before though that is a question with no statistically valid answer since the population sample is self selecting with a bias towards positive results.

Oscar is a bit of a cynic. Yes, do talk to your doctor. Enterolab has been the topic of many lively discussions here and remains a controversial subject.

Well he lives in a trash can! That would make anybody cynical since all you'd ever see is the world's garbage, never any of the good stuff. We should all chip in and buy him one of those new anti-bacterial UV sterilizing touchless kitchen garbage cans.