WheatChef

Aside from w/e reasons you have for doing something most of us would consider impossible as a fellow sufferer I'll recommend some things.

The initial phases of your body getting used to this will be absolutely terrible, marked by increased inflammation, all sorts of digestive issues and possible neurological symptoms as well. What you're going to want to do is to try and minimize all of these little side effects of the disease that you can. Focus on reducing inflammation as much as is possible. Things like aloe vera, fish meat or even just cod liver oil, olive oil/olives will help reduce systemic inflammation decreasing the amount of damage done overall. Additionally frequent exercise (not cardio) will help a bunch with that inflammation as well even though you probably won't have the energy to have heavy workout sessions at least try and get some in.

As far as the digestive issues go, the intake of gluten again will be causing your intestinal walls to start leaking like a sieve, if you're not already on them start taking probiotics en masse along with frequent consumption of fermented foods. This will hopefully somewhat decrease the negative effects on your internal microbes that is almost a constant with all celiacs and will somewhat diminish the amount of permeability increase you'll experience on your intestinal walls.

Since you'll be running the risk of several nutrient deficits you'll also want to look into a number of vitamin supplements. A simple trip over to the pre-diagnosis forum will show you some of the more common deficiencies that people experience on gluten. Some notable ones to watch out for are Vit-B (most of them), Vit-D, Iron and Protein.

Best of luck catching the russian spies or w/e it is you're doing.

Till it gets moved:

I notice much better energy levels when avoiding every single grain. The only one that doesn't seem to cause any sort of energy leeching is white rice in small amounts (but I don't even eat that now).

No matter the source, there's nothing "innocent" about sugary treats. Aside from all of the additional additives they put in those things (such as some of the more toxic food colorants, soy emulsifiers and the cheapest ingredients they can get their hands on) each of those little treats is way more glucose than your body can accommodate in any one eating. That's just from a health perspective as I won't go into Nestle's terrible human rights records. If you don't feel good eating some junk food then there's many different reasons besides potential wheat contamination that can cause it.

In most procedures, if they're not looking for it then they won't find it. This is much more true when it comes down to the actual lab test. There's no one chemical that will give you a whole lay out of your total health. Each different condition gets treated with it's own special chemicals or tests and they're not usually cheap meaning that if it wasn't asked for specifically it's not going to get done.

Your test is pretty strongly positive. The deamidated test is a lot more accurate than the TTG test. That being said the odds of a false positive result for either test is very low, like single digit probability low for each one. Factor in that you hit a positive on 2 tests and you're probably looking at a probability lower than 1% of it being a false positive. After results like that a biopsy is more of a formality for the doctor than it is for you although since celiac disease doesn't always occur alone it might not be terrible to have someone scoping out your guts anyways. As the others said, with those results you need to go gluten free immediately after the endoscopy. IMO, if your doctor comes back with negative results from the biopsy and tells you that you shouldn't consider the gluten free diet then you may wish to consider finding a better doctor.

The only good medical advice:

-Doctor, it hurts when I do this.

-Don't do that.

Hrm, the lack of dandruff is somewhat confusing. Are you saying that there's absolutely not noticeable skin shedding from your hair? I'm sure there could be cases of fungal scalp infection without severe dandruff but that also could point to other options. Did your dermatologist conduct a scalp biopsy? There is actually an awkwardly high number of immune system cells on your scalp, there is a possibility that your scalp inflammation is tied to your immune system's response to gluten and excessive immune response on your scalp would result in hair loss. Such a reaction would not just disappear overnight after having removed gluten from your regular diet, often times it takes a number of months for your immune response to die down totally from such a trigger, dermatitis herpetiformis sufferers often times take up to 6 months for their skin reactions to resolve after starting a gluten-free diet.

Alternatively there also exists the possibility of a bacterial scalp infection which would cause all the inflammation you mentioned and like a fungal infection can occur with mild/no dandruff but I'm a lot less familiar with it's specific symptoms, additionally attempting to treat this with antibiotics first could end up making the condition much worse if it turns out that it was a fungal infection instead. I say attempt the topical treatment of -azole first, unlike the oral administration of -azole's, topical treatment is much safer on the body and generally doesn't require doctor supervision of liver function.

You wouldn't need to follow the diet if it is indeed just a topical problem, but it would help. Excess consumption of carbohydrates makes the body much more susceptible to malicious fungal infections and the "candida" diet attempts to deny the yeast their fuel, although some of the candida diets out there are a little um... overtly hollistic and have some not so well thought out additions to them. In general any ketogenic diet wherein over 65% of your calories are coming from fats with 25-30% coming from proteins will help stop fueling yeast infections anywhere on the body. A good simple place to look to see if the possible infection has spread to other parts of the body is to just check the back of your tongue in the mirror. Is there any white/yellow/green/orange stuff back there? If not then you're probably ok at just looking at topical treatments.

BUT, why is it any different from Celiac Disease? Both cause the immune system to react to gluten by creating antibodies...

Does gluten intolerance mean that if I eat some donuts or pizza, I'll just feel like garbage for a few days, but no real damage is being done?

And if the antibodies ARE causing damage, then why should just Celiac Disease be taken more seriously by not only the medical community, but also restaurants, family members, etc.?

I guess in my brevity I didn't explain it well. What I mean to say is that it's not really different from Celiac disease. The main difference between the two being the presence of blunted villi in the small intestine (celiac disease) or no observance of the blunting. By being specific and relying on this definition for "the real disease" the medical community is kind of acting like a fever is the real disease in a viral infection. Yes the fever (celiac disease in this analogy) will cause excess damage, but it's merely a symptom of the underlying viral infection (gluten intolerance in the analogy) and something that wouldn't have occurred were it not for the original viral infection. By focusing on celiac disease (defined by a reaction in the small intestine) instead of gluten intolerance (possible body-wide reaction) they're kind of missing the forest for the trees as the specific intestinal damage of celiac disease doesn't need to be present for the damage from gluten intolerance to occur in your brain/heart/lungs which I'd say are at least equally important organs.

On that note, if you do eat the donuts or pizza as a gluten intolerance then real damage is certainly capable of being done! Unless you don't consider neurological impairment to be an issue, or possible asthma, or coronary disease.

Celiac Disease is taken more seriously not because it's a more serious disease, or even that it's arguably a separate disease at all; it's taken more seriously because of one of the basic problems with a lot of modern medicine. The medical community is built on the idea that if you can't easily test and observe a problem then it simply doesn't exist. This is great and all if you believe that we as humans have already invented every single biological/medical/chemical/genetic test that ever will be. As far as treatment goes in the medical community many doctors are forced to explain their reasonings behind certain treatments an are forced to use random integers they get back from medical tests to validate their actions.

In the test for celiac disease the "condition" and cause are relatively easy to prove. You shove a camera down someone's throat, look for observable damage, cut off a piece of the intestine and look more specifically at that sample for evidence of damage. Because you're limiting the scope of the test to one specific organ it's so much easier to validate or show the actual presence of an arbitrarily defined measurement of damage. With gluten intolerance being a systemic problem that doesn't react exactly the same in all patients that validation becomes much more difficult. Because you can't just look at one single area in every gluten intolerant person and test for damage to that specific area then according to a lot of people in the medical profession, the condition simply doesn't exist.

I never had the intestinal biopsy to "prove" celiac disease and my TTG numbers were low. That being said I could give a crap less what the medical tests show if I was able to eliminate my schizophrenia, depression, severe social anxiety, asthma, hair loss, poor blood sugar regulation and numerous digestive issues just by eliminating gluten from my diet AND get a flare up of some of these symptoms if I accidentally consume gluten again. At that point who really cares what the tests show or what specific label I'm given, the stuff is toxic to my body and I can't even consume one crumb of it without noticing. Since I normally don't feel like describing in specific detail everything above when I'm out I normally just fake it and say I have "celiac disease", it saves a lot of time and I think it sounds better than "I have a gluten intolerance".

Yes, Pacific Natural Foods broths are gluten free, lists so right on the side of the container. Alternatively a lot cheaper and arguably better option is the Better than Bullion brand of dehydrated stocks. They can be found in most regular supermarkets, are very flavorful, make a lot of stock/jar and are all gluten free as well.

What is the photo sensitivity caused by? Mine was absolutely terrible since I was a little kid (around the same time I believe I developed my gluten problem) and lasted all the way up until a few months of being gluten free.

It was always the toppings *on* the pizza/pasta/roll/sandwich, not the wheat itself

Hehe, before finally nailing it down I thought the cheese on a pizza was making me sick (even though cheese by itself wouldn't), well no maybe it was the tomato sauce (even though tomatoes by themselves didn't cause problems). Well what about the problems I'm getting from peanut butter sandwiches? Obviously it's a peanut issue (even though honey on toast caused same problems). Oh great now I'm seeming to notice that brownies are also causing this very same issue I'm getting from the cheese/tomatoes on the pizza and the peanut butter on the sandwiches, must be an additional problem with chocolate. Finally ran out of additional ingredients to blame it on while I had started keeping a food journal and finally saw the thing they all had in common.

Diabetic parents normally feed their kids the same crap that's killing them. If he's overweight as a kid it's probably more likely to be diabetes/insulin resistance that it is to be a condition that prevents food absorption.

Most often times celiacs are former carb junkies. I'm entirely sure how specific of a term that is anymore considering that 50% of the US population at least (not sure about AUS's make up) is set to be diabetic/prediabetic in the next 10 years. HALF of our population is set to develop severe regulatory health issues as a direct result of eating too many carbs and yet no one really seems to make the connection for some reason. The bruising thing is something I noticed at the beginning of your post which may be partially explained additionally by your low meat consumption that you mention near the end. Eat meat, good meat in mouth means good meat on body. Carbs have a noticeable addictive effect on us mentally and physically and if you're a carb junky you'll never truly be full because carbs burn up so ridiculously fast/cause severe insulin spikes/leads to insulin resistance/leads to excess lipid oxidation/leading to hypoglycemia for a short while until you eventually cross a threshold putting you in hyperglycemia (diabetes).

One thing to be mindful of when doing your gluten-free trial is your overall carb consumption. If going gluten-free to you means that you're also reducing the amount of carbohydrates that you're consuming then it might not be so easy to determine which increases in health are related to the reduced gluten intake or the reduced carbohydrate intake. Try going to a site like nutritiondata.com or livestrong.com and determining what your previous carbohydrate intake was and try matching that with gluten-free alternatives. When doing this, the important number to look at is the Net Carb content which is the Total Carbohydrates - Fiber. Fiber will burn in a calorimeter (instrument used to determine those caloric measurements) but it will not "burn" in your gut so it doesn't count as a negative.

That being said, wheat increases blood sugar higher than anything else out there.

Edit: as to your gluten-free trial, certainly keep it up. Some people can unfortunately go for a small handful of months before seeing any real improvement on the diet due to individual severity of damage. Gluten certainly can cause most if not all of the problems you mentioned above, a gluten intolerance is can be an amazingly destructive disease but it affects everyone in different amounts/ways. The tingling in your hands and feet you mentioned, is it an electric tingling or a kind of itchy tingling underneath the skin and primarily located on the palms of your hands and sole of your feet?

It's actually not marketed/prescribed in the U.S. at all. It's simply Estradiol, which is a strong form of estrogen hormone therapy. Estrogens in general suppress androgenic (testosterone/DHT related) hair loss such as male pattern baldness. If your scalp is getting inflamed/itchy/burning especially in any sort of relation to anything you eat then this is not the type of hair loss you are experiencing. From the sound of it, the multivitamins/biotin won't really help all that much in your particular situation. The key part is to determine exactly what's causing the inflammation of your scalp and remove it. Unfortunately for many celiacs the compromised immune system + altered intestinal bacteria aspects of the disease make us highly susceptible to a fungal infection known as candida. This infection can easily go systemic (affecting all of the body) in people with our conditions and certain dietary triggers will influence the severity of the infection. One common place for the infection to spread to is the scalp which is part of the reason why all of those "anti-dandruff" and even hair-loss shampoos are all simply anti-fungals. As far as topicals go, one of the most effective scalp topical treatments is called ketaconazole (-azole means it's an anti-fungal) which is sold under the brand name Nizoral in the U.S. and most of Europe. In the U.S. it is available over the counter in it's 1% strength form with a more successful 2% strength version available by prescription only.

A simple way to see if this is at all something that is effective for your type of hair loss is to use any type of topical fungicide containing either the ketaconazole mentioned above or miconazole or fluconazole, all 3 of which have been shown to be good treatments of candida infections. After a few days/weeks you'll either get a reduction in the inflammation which means it's working or technically you could get a temporary increase in inflammation as a result of the shampoo/spray which also would mean that it's working as the symptoms of a yeast infection sometimes worsen while the yeast/fungus are killed off.

The Estradiol solution you are using now might be temporarily effective in reducing the amount of hair loss done, however if my suspicions are correct (dermatologists most often are absolutely terribly inaccurate at properly diagnosing hairloss) then the administration of estradiol will actually weaken your immune system allowing the infection to eventually spread further. Androgenic based hair loss does not cause inflammation, you've got a different type of hair loss.

Gluten intolerance is an autoimmune response to gluten that can affect every major organ in your body as a result of consuming gluten. Celiac disease is simply a symptom of a gluten intolerance manifested in the small intestine. It's a pretty outdated term overall.

I couldn't fathom how Taco Bell anything could be considered "safe". Most expensive restaurants can't even get cross contamination issues correct, what chance do you think a Taco Bell staffed with nothing but minimum wage workers made up of probably zero people at most locations knowing anything about celiac disease? Whole foods are gluten free, green leafy vegetables, beef, chicken, pork, eggs, fresh herbs and aromatics, mushrooms. That being said, if you absolutely need junk food, try New Cascadia bakery on i believe SE 6th and Market just 2 blocks south of hawthorne. Their desserts and pastries are so amazingly delicious, the entire facility is gluten free. I'd still frequent there if I hadn't given up carbs and all that grain crap altogether. Oh, Whole Bowl is gluten-free too.

As for the lack of new kitchen utensils, the amount of potential harm caused by these will depend in large part on what sort of cookware they are. I think the toaster is pretty much out of the question, if you don't wish to replace it now then simply put it away in a closet for now it's not like there's any decent gluten-free breads for you to put in it anyways... The pots and pans will really only matter if they are cast iron (which unfortunately will need to be replaced) or teflon/nonstick pans with scratches (which are carcinogenic/toxic and you should have thrown out a long time ago anyways). Bare metal by itself (non-cast iron) is safe as soon as you wash it for the most part. Things that get people the most I think are the toasters/cast irons/cutting boards, plastics are potentially covered in dangerous little pores that can house gluten.

The upper limit for declaring something gluten free is that it contain no more than 20 ppm of gluten. This is roughly the equivalent of 1/2 of a single drop of water in a 1 liter bottle. Since a 1 liter bottle is quite a bit over a single serving you then start looking at a limit that is potentially in the hundredths of a drop of water measurement. On a weight basis if you're considering a 1/2 lb meal then the limit would be about 0.0000022 grams wherein 1 gram is around the weight of a paperclip. This means that yes we are dealing with a very small amount! This is why it helps to be vigilant about avoiding cross contamination from shared surfaces and equipment, you won't really know till later on in your gluten-free life exactly how sensitive you happen to be but you wouldn't be doing yourself a favor to constantly be exposing yourself to concentrations which you may be sensitive to during your healing phase.

Alternatively, this could be a separate diet issue, ie: vegan or vegetarian diets.

How long have you been gluten-free? What exactly is your iron therapy utilizing? What sort of a diet do you eat?

Almost 30 myself and am currently just a bit past the 9 month mark past diagnosis. I must say that some of the most impressive gains in cognitive function have been in the past month or two. I know the first few months of being gluten-free were marked with severe improvements in psychological disorder symptoms and while my working memory did increase my thinking was still noticeably fuzzy. Lately however it definitely feels like I have been hitting new levels with my memory and logical processing.

Long term damage can take long term recovery periods to correct, just hang in there.

Casein is a lot like gluten in that it can be associated with a major systemic food intolerance reaction in someone predisposed to it. It's not something that can trigger a gluten reaction though if that's what you're asking, there's actually a lot of different possible food intolerances out there that all have their own special little immune response.

As far as thinking that you need any of the nutrients from dairy well that's certainly not true. As you are aware kale has calcium but it's also found in a number of other sources. Obviously all of the other leafy green vegetables have decent levels of calcium in them (collard greens/swish chard/spinach/chinese cabbage/bok choy/mustard greens & even parsley) but other sources include nuts and seeds, seaweed, fish bones (such as canned sardines/salmon/mackerel) shrimp and raw oysters. If you're thinking you were having VitD or VitA problems (often supplemented into milk) then simply check out all the dietary sources mentioned for those down in the Vitamin A deficiency post a few posts down in this subforum.

If you went on a the full prescribed dose of diflucan and it took care of the majority of your symptoms save one then at this point you should be looking for a different trigger for that one symptom. Diflucan is normally pretty good at destroying the yeast infection and should certainly work longer than 9 weeks if you're on that anti-candida diet. Try looking at other possible sources of food intolerances/allergies by keeping note of everything you've eaten in connection to the times that your rash appears. The allergy/intolerance blood tests are not the most reliable measures to determine if you don't have a problem with something. The symptoms you mention sound a lot closer to an allergic reaction than an intolerance issue.

Considering that the latest scientific recommendations for pregnant women are to supplement with 4,000 IUs/day for VitD I don't think you'll have much of an issue hitting the toxicity levels for it. Also considering that recommended level for supplementation, I'm betting the standard range given on your test results were out of date and ridiculously low. The "Adequate Intake" value given to us by our always dangerously inept at nutrition government is at 200, so they're only off by a factor of 20... Apparently the only recorded case of toxicity from VitD supplementation was the result of a manufacturing error whereby pills contained over 400x the labeled amount and resulted in a man taking between 150,000 and 2,000,000 IUs every day for almost 2 years. The man fully recovered. Vitamin D is necessary for the proper genetic expression of over 200 different proteins so you will probably only experience a side effect of better health/athleticism/respiration/etc.

Alternatively, if that tingling/burning is itchy then it's likely a yeast infection (athlete's foot), which when recurrent is also another symptom of a gluten intolerance. Overall the only good thing your doctor did was to recommend that you keep a food journal (VERY good idea) as any doctor who ever mentions IBS like it was an actual condition should have their license revoked. If you're of european descent then you're much more likely to have the genes for a gluten intolerance than a lactose intolerance, yet the gluten intolerance will cause a secondary lactose intolerance!

Make that food journal though!

Meats and especially meat organs are your best sources for all fat soluble vitamins. If you simply can't stand it though, alternative sources include eggs or better yet some simple fish liver oil! One teaspoon of the Cod Liver Oil I have in my fridge contains 850 IUs of Vit A and over 400 IUs of Vit D (they work well together). Add to it the additional anti-inflammatory and cognitive boosting effects of fish oil supplementation and this may be something you'd want to try out.

Sounds like you're getting into a dangerously cyclical situation with your blood sugar levels. Milk in general has higher carb levels than most cheese. Hard cheeses for instance can have almost no carbs in them at all, just glorious fat and protein! SGWhiskers's advice is very good.