NicoleAJ

Karen--that's fantastic news and an inspiration for those who are still struggling through the paperwork and stress. Congratulations.

Also, Air India has gluten free meals as long as you order them in advance--this is important since it's a very long flight and there are so many restrictions on what you can bring on an airplane now. Although I will say that they are much more accomodating to their business class passengers than their regular passengers.

Yes, it is difficult teaching English and reading on the Internet, but I just have to take my teacher hat off when I'm surfing the web. I'm relieved when my students' errors aren't quite as egregious as some of the things that I read on medical websites. GFP--I'm sorry I didn't see the post sooner. I was actually going to suggest Eats Shoots, and Leaves--I'm not sure what you mean by errors in the preface. I found no errors in the American preface. In fact, I recommend the book to my students who have difficulty with grammar, and then I just point out the differences between British and American grammar.

I agree with GFP's statement about foreign languages--I know that my Spanish and Latin grammar is strong, but my ability to express myself verbally in those languages is weak. In addition, my non-native students often have better English grammar skills than my native speakers because they take the time to learn the intricacies of the rules (they just lack the vocab that comes naturally to their classmates).

I've copied and pasted to make the corrections easier. I teach writing at a major US university. I corrected the run-on sentences and cleaned up the syntax in several places as well as a few typos. I also cut the self-deprecating 2nd paragraph since it takes up a lot of room, and the grammar, especially when fixed, does not merit such a paragraph.

Dear Sir,

I realise that your article was about the “rubbish” added to bread, but I find the comments on coeliac disease a cheap shot. I realise that a certain artistic license is not only permissible but needed to add interest to stories, but, in this case, I feel it has led and will continue to lead to misconceptions, ultimately creating a more difficult time for Coeliacs and sufferers of Chrons' disease.

Let me comment initially that I have no doubt that your article is certainly well intentioned, yet the style and use of facts casts the article into a certain genre before anyone has the chance to read it. [what do you mean by this? Be more specific about which genre]

The article casts coeliac, in particular, as a problem with the quality of bread, and while I support wholeheartedly that non-coeliacs should not view the “English white loaf” as a personal vice. However, for those of us who suffer from the disease, this is simply not the case. To an extent, the article prostitutes the disease in order to drive home already poignant observations. As a coeliac, myself, I am passionate about the public perception of this disease, and I see by the research conducted for this article, that you also share this concern.

I'd like to respond to some of your statements specifically. You say, “Coeliac disease now affects one in a 100 people, other wheat intolerances probably more. How did we get here?”

Coeliac has always, or at least in “written history” affected one person in a hundred or more accurately 1:133 within the general European population. We could start written history of the European genotypes perhaps in pre-Hellenistic times, but I believe that is simply splitting hairs; moreover, Hellenistic Greece and its military based facsimile of Republican Rome is as good a place to start as any. Aretaeus of Cappadocia wrote about coeliac disease in the 1st century A.D. in works which are still extant. The Romans were good record keepers and hence we know exactly how much bread was eaten by the general populace, indeed this figure is so well known that it is successfully used to determine population of a city from its mills and bakeries and inversely to predict a certain city must undiscovered extents [meaning unclear here] because the bakeries can not provide sufficient bread for the known population. We also know the market prices of bread not only in Italy but also empire wide. I could expand on this, but I fear you would lose interest. Suffice it to say the average Roman citizen consumed 2 kilo's of bread per day. We can perhaps halve this figure because of undeclared domestic help, but this figure is constant throughout the empire and huge logistical measures ensured this.

In other words, coeliac disease is not on an increase due to increased bread consumption, but coeliac diagnosis is increasing due to advances in medicine. As much as I doubt the additives are healthy, one could equally say that bread made with water from lead pipes was also unhealthy.

Coeliac disease is an inherited auto-immune response, specifically in relation to the DQ1 allele which are relatively common in type R haplotypes. Other as yet unmapped genes may also be responsible and this is considered work in progress. One either has or does not have coeliac disease, just as someone is either pregnant or not, there is no such thing as being slightly pregnant, neither can one be slightly coeliac. However, the auto-immune response to gluten can be just as different as a person's response to being pregnant--not everyone has morning sickness, yet everyone has a different hormonal response. In other words, one's response and symptoms may vary, but the underlying cause remains the same, an auto-immune response to gluten or more specifically certain chains within gliadins.

There is of course a plethora of alternative theories on this accompanied by a veritable cornucopia of speculations; there are, for instance, suggestions that adeno-virus may act as a trigger, that Lymes' disease may also do the same in much the same way as Warren and Mitchel speculated on heliobacter pylori in the case of duodenal ulcers. Any and all of these remain valid yet the best that medical science can say for definite is that zonulin production and its control inter-cellular permeability plays a major role.

In additional to the gastro-intestinal issues coeliacs and gluten-intolerant people face a host of other symptoms. The continued production of antibodies exerts an enormous stress on the thyroid and lymphatic system causing elevated incidence of failure, malfunction and ultimately cancers. Transmission of gliadins and byproducts into the vascular system are responsible for increasingly recognised neurological symptoms ranging from various neuropathies (1) to ataxia.(2)

So if you are still reading, let me describe the problems coeliacs face on a daily basis.

By far the most common problem we face every day of our lives is public perception. Coeliac disease is not a health fad nor a “malade du jour” regardless of whether or not a gluten free diet is considered chic or fun. A single crumb of gluten will make us ill for 6-8 weeks (3).

Every-time we eat out --and as a journalist you must understand this is not always through choice but part of work-- we have to cope with servers and chef's who think brushing off the crumbs is OK, that you can pick out the croûtons or fry in the same oil. Not only is it not OK, it is much more gluten than is required to make a coeliac significantly ill. I could write 3 pages of everyday cross contamination, indeed I have previously in catering guides, but I can sum it up in a sentence. No means no... and gluten free means gluten free.

I could similarly rant for a further 3 pages on “hidden gluten” that is gluten used in places it is not expected and this itself relates directly for instance to your reference to transglutinamase. Equally I could point out that every bottle of soy sauce is made with wheat in every restaurant and soy sauce is not even scratching the barrel with where the food industry finds uses for wheat derivatives. Indeed the EU has a prize each year for the most inventive use of wheat byproducts in food, I'm sure in there somewhere is a story. I can point you to using wheat derived dextrines to make sliced meat stick together or simply the use of wheat flour as a filler in products to bulk them out or prevent frozen chips from sticking together, but these are simply the tip of a huge iceberg, which is inexorably and mercilessly stream-rolling or should I say ploughing its way through the food industry.

When these two items, cross contamination and hidden gluten, are put together the daily life of a coeliac is reduced to an exercise in risk management.

The UK has two groups of coeliac, the largest by far being those who are undiagnosed. Additionally, the medical profession possesses an inertia which requires time and energy to change. Too many GP's still regard coeliac as a rare disease and others as a childhood disease and sadly this even extends to specialists in gastro-enterology. Too many GI specialists are still convinced that of the thousands of patients they have seen with IBS none of them have coeliac disease. Simple statistics from screening indicate otherwise since even from a random population 1 in 133 was a misdiagnosed coeliac, and when one looks at a sample of IBS patients randomly screened, the figure is closer to 1:25.

I agree with LauraJ that you should try to do elimination diets, one at a time. Your doctors may not be responding to your need for help, but this is something that you can do without their help. Is there anyone who can help you with trying to get a hold of the doctors? Sometimes when you're so sick it's difficult to handle all of your medical appointments yourself. I was really sick for three months before getting a diagnosis on Monday, and I was so tired of keeping track of all of my appointment and calling all of my doctors that I'd sometimes ask my boyfriend to help me out, and between the two of us, we managed to get through it all without forgetting about something or not hearing back from one of the doctors, etc.

I had no idea that medications could lower B12. Fortunately, I'm not taking any meds except for occasional Maxalt for migraines.

As far as the insurance is concerned, I have graduate student insurance that I pay less than $20 a month for, so they'll pay for anything that you can get at the student health center pharmacy, but their supplies of different types of medicine delivery are limited. It'll be a different story once a get a real job.

Thanks everyone for your support, and thank you Rusla for the heads up on the sublingual B12. I think, like Melie, my insurance pays in full for the B12 shots but not for over-the-counter at all, but it's certainly nice to know that there are options out there. Deej--I'm sorry to hear that you were misdiagnosed with MS before getting the correct diagnosis--it must have been a relief by comparison. I know that it's going to be unpleasant to get frequent shots, but I'd take those over MS any day.

This morning, I woke up after 8 hours of sleep completely rested and rejuvenated--it was wonderful. I hope you have that feeling too Matilda. Also, my foot hasn't gone numb all day. The only problem is that I have a killer headache, but I think it's hormonal--bad time of the month.

I used to get frequent migraines before going gluten free--3-4 per week. Part of this is because I had become over-the-counter drug dependent from taking too much Advil. I took it so frequently that if I didn't take it, I got a headache or migraine. I broke the cycle by going to biofeedback therapy at my neurologist's office. They attach electrodes to your back and neck to measure how much tension you're carrying with you on a daily basis, then they keep the electrodes attached and ask you to do several relaxation exercises. They show you on the screen which things ease the most tension and which things are unhelpfu so that you know what to do to reduce the most tension in your back and neck. This helped me immensely. I only got a few migraines each month after that.

When I went on the gluten free diet, I had a few migraines during my withdrawl period, but then I didn't have another migraine for almost two years. I just started getting severe migraines back a few months ago, but it turns out that it's related to the fact that I have pernicious anemia.

By the way, for those of you who haven't tried it, Maxalt works really well for me.

P.S. If you have a migraine for over 72 hours it becomes a status migraine or transformed migraine--see your doctor about this. I had one a few months ago, and I had to have a prednisone reduction to get rid of it--rather unpleasant if you ask me.

Chelsea,

I'll certainly miss your poise and wit--you're always so informed on just about everything. I can respect your decision, though, and certainly agree that there have been some unpleasant threads around these days. It seems that even the most innocent thread is liable to get hijacked and turn in a very different direction, but I hope you'll be back soon and that the board culture will shift back to its more friendly and helpful attitude.

Yeah, it probably would be good to be able to do the shots myself, but I'll just see them do them for the first few times. I'm going back to the doctor in six weeks, so he can see how everything is going.

Melie, do you have to get your levels checked every once in a while, or do you just know how often you need the B12 based on how you feel? Also, where do you get needles? Do you need a prescription for that?

A while back I posted about the possibility of having MS, and again I want to thank everyone for their truly encouraging words and support.

When the MRI of the brain came back normal, I thought that meant that I couldn't have MS until a technician told me that there was an abnormality in my visual evoked potential test. I was a wreck until I talked to the doctor this morning. It turns out that there was an abnormality in the waves that my optic nerve was transmitting because I have a lazy eye, but the response time in the nerves was perfect. So it turns out that I do not have MS or neurological pathology, or diabetes, or anything else they can detect. I just have a B12 deficiency, so I need to go to the doctor for shots, and my numbness, fatigue, mouth sores, and other symptoms should go away.

I would, however, love to hear from other people who have this problem, so I know a little bit more about it and what to expect now that I'm on the shots.

Jess,

I'm so sorry to hear about all of this, but you've done a commendable job at dealing with the difficult situation at work.

As far as the puppy is concerned, I'm sorry to hear about that as well. One word of advice--wait a little while before getting a new dog, and clean absolutely everything in the house with bleach. I adopted a dog from a pound that ended up showing symptoms of distemper within a day of coming home. After hundreds of dollars of vet bills and nearly a month of truly loving care, it was clear that he would not pull through, and we had to put him down. The vet had given me hope, since he was so young and vital, but we just couldn't watch him suffer. You did the right thing, but you don't want to bring a new puppy into an environment where another dog has been so sick, just as a precaution. Throw out all of the toys, collars, etc for the old puppy, scrub everything down and air everything out before exposing another puppy to germ infested areas. I got another rescue dog a week after the first dog died, and she started to get sick at first--luckily she ended up being just fine, but I was panicked in the mean time.

After you got sick from a child's germs on your keyboard, you don't want something similar to happen to your next family member.

It's a brand called "Lighthouse" (I think - already threw out the bottle in disgust). I'm not sure if they sell it in PA, but it's a typical brand in the Denver area.

Well, we made it to State College! Went to Weis to get some easy stuff to eat tonight in the hotel room and found the Amy's brand of salad dressing I like (didn't see the Lighthouse brand of dressing). Got some pre-packaged sushi - awesome - gluten-free and soy free! woohoo! I'm off to discover State College tomorrow...got a rental car while my husband is tied up with work. I feel like I'm off to see the wizard!

I'm so glad that you're enjoying State College so far. Good luck in all of your exploration.

I agree. These cookies are unbelievable. I was skeptical when reviews on epicurious.com said that no one could tell the difference between these cookies and "real" cookies, but I was amazed when I took them to a party and they were all gobbled up with everyone saying how great they were.

Sorry to hear that you were glutened--salad dressings are always a tough one. I just stick with a few stand-bys. I'm so glad that you're getting excited about your trip. Let us know how it goes.

As far as fences are concerned, as with many rural areas, there are several houses near the downtown area that have fenced in back yards and there are many on the outskirts of town that do not. State College is a very dog friendly place, and there are plenty of areas to take dogs on really long walks. You might just have to build some sort of pen if the house you find doesn't have a fence. You'll also notice that the housing is completely affordable. Two of my friends bought nice houses this year close to campus with decent lots for just under $100k. Also, I forgot to mention that there's a steakhouse on the SC side of Harrisburg called DaPitts, and it has great food. If you get the steak, they simply use McCormick Montreal seasoning, so it's fine, and if you get the grilled vegetables, you just have to ask for them without seasoning/butter. They have been accomodating each time I've gone there.

If you get confused about where to eat or get gluten free groceries, just PM me, and I can give you my phone number--it's easier to give directions over the phone rather than writing them all down.

The docs were so sure I had MS that they did MRIs regularly for six years just waiting for the scales to show up. Turns out that, like many celiacs, my nerves had been affected. The neurological damage from celiac disease mimics MS closely. The good news is that it gets better the longer you are gluten-free. In my case the damage was so bad that I will probably not fully recover. Still, I am so much better that I won't argue.

Cdford--did your neurological symptoms show up before your celiac diagnosis or after? All of my neurological symptoms showed up two years to the day after my celiac diagnosis (when I started the gluten free diet).

Penguin and Tailz--thanks for the info on Epstein Barr--that's a relief. Also, Tailz, I have had one weird symptom that involves weakness in my face--when I was on prednisone there were two nights where I woke up and my eyelids wouldn't open on their own; I had to force them open with my fingers, not because they were crusted with anything but because they were just too weak to open on their own.

Again, thank you everyone for your kind words of support; it really means a lot to me.

Hi Deb,

Did you see any of my posts on State College? I'm a graduate student here, and I thought that I'd be doomed moving from the metropolitan Miami to the rural State College, as far as my diet was concerned, but there are actually tons of options here. Wegman's grocery stores clearly label all of their brand name products, and if they are gluten free they will have a little round G icon on the upper left side of the product. In addition, we have one great health food store with a lot of gluten free/soy free products called Nature's Pantry. There's another that's not so good that's called The Grainery (or something like that). In addition, even Weis and Giant carry some gluten free products.

As far as restaurants, we have Golden Wok ( I can tell you which things are gluten free if you like), Outback, Chili's, TGIFridays (though I've never been there since I've never really been a fan of their food). In addition, the Tavern downtown is very accomodating, and under the dining category of this board I've submitted an entry on The Gamble Mill Tavern in Bellefonte (15 minutes from SC), which is the most amazing place in this area to go for a gluten free meal that you don't have to cook yourself.

Unfortunately, there aren't a lot of option for places to eat on the drive from State College to Harrisburg--in fact, there's not much on that drive except for mountains and fields. There's one McDonald's, but I never eat there because of cross contamination issues.

If you have any more questions please feel free to PM me.

Good news--the MRI of my brain came back normal. Thank goodness! We still don't have answers, but without lesions on the brain, I'm not really concerned about MS anymore. I'm going in for an MRI of the cervical spine and an EMG of the right leg next week.

Lorka--I do stretches but mostly of the back and neck since my physical therapy was prescribed during the time when the neck and back pain was the most unpleasant symptom, but I've started to do some more leg stretches recently. I'll just have to learn which ones help the nerve pathways in the leg the most.

I can't thank you all enough for all of the great information and words of support. I really appreciate this, as it's been a difficult time. I can speak to friends and family about this, but I have a lot of close friends that I work with that I haven't told about these issues because I don't want it to get back to my employers that I'm struggling with something nasty--I just want to do my work and get on with it. Consequently, I really appreciate that I can come here to talk about all of this.

At any rate, my right foot when numb on Sunday, and I haven't regained sensation--I just know this is an accident waiting to happen. I'm likely to step on it in the wrong way and hurt myself, so I'm being very careful when I walk. So if anyone has any suggestions for how to walk with a numb foot or how to soothe the nerve back into good behavior, I'd really appreciate it.

Doll--I don't think that the bloodwork they've done has been very specific just yet. I've been tested for lyme disease and a few other things, and my normal bloodcounts all looked good (high hemoglobin, etc). I also don't have mono--I had a pretty nasty case of it in college, and reoccurance only seems to happen in 1-2% of the population, and this just doesn't feel like that. I've also been vaccinated for meningitis. I haven't been tested for Epstein Barr though. The neurologist is going to test my B12 levels soon.

Lorka--I'm so sorry that so many people in your family are suffering with MS. Do you know what they do for numbness? That's the symptom that I dislike the most.

Nancy and Lindalee--I'd love to know the name of the book if you happen to have it handy--it would be really helpful. My doctor knows a good deal about MS, but he is not a celiac specialist by any means.

2kidsforme-- Thanks for the great site--I'll spend some more time exploring it. And thanks for the words of support as well.

P.S. I had my MRI yesterday--we'll see what it shows in a few days.

On Tuesday I'm going in for an MRI and mid-September I'm going in for evoked potential tests because the neurologist seems to believe that there's a possibility that I have multiple sclerosis. From what I've learned thus far, this also seems to be an autoimmune disorder, and I was wondering if anyone had ever been tested for this before and found out that it was something else or if there is a link between MS and celiac. I'm just hoping that something simple accounts for my recent symptoms, such as numbness in the tongue, blurred vision, migraine, pain in the cervical and thoracic spine, and fatigue, among others. This has only been a development of the last 7 weeks, so I'm hoping that it was just a virus gone bad and that it will clear up soon. My neurologist does not diagnose fibromyalgia, and I'm happy for that because I really think that there must be an explanation for all of this.

I just mapquested it, and it seems to be only 20 minutes away. I'll be sure to check it out. Thanks so much for the recommendation.

My boyfriend and I are going to a resort in Hancock, MA during the last week of December/first week of January, and we'll have our own kitchen in the resort (as well as a jacuzzi tub and fireplace in the room), so we'll bring our own food to prepare, but we'd also like to know if anyone has gone to any good restaurants in the area that have been accomodating for gluten free travelers. Thanks so much!

Bromelain is great. I had to have sinus surgery a few years back, and my doctor suggested I take it for the weeks leading up to my surgery. When I finally had the surgery, I had bruising and swelling on the first day, but they cleared up within a day or so rather than lingering for a week or more.

I went to the North Miami Beach location a few days ago, and they had the brand new gluten free menu--it wasn't even folded yet. It had a lot more restrictions but essentially had many of the old stand-bys included. One disappointment was that the light alfredo sauce on the Hearts of Gold Tilapia was listed as no longer being gluten free. You also have to be careful because my menu had a chicken dish on it that came with corn cakes, and the waitress pointed it out and said that it was a missprint--it was not, in fact, gluten free. I still got my 9 oz steak with the garlic mashed potatos and the unseasoned steamed vegetables. Unfortunately there was a mix up that caused my entire order to take one and a half hours to prepare, but the manager paid for our meal and gave us a gift certificate to return. Also, when my veggies came out finally, they were seasoned--she told me, in the future, to ask for the veggies unbuttered because they don't add seasonings to the veggies but they do add butter and that is what contains gluten. I'd never had a problem with this before, but it posed a problem this time--good thing I had my mom taste the vegetables before I tried to eat them.

For the record, I do believe that the chocolate brownie thing was still on the gluten-free menu.