mcc0523

Thank you all, I'm glad to say that I'm feeling less anxious and able to think a little more clearly now that I've stopped eating wheat now. The only person who has dismissed my food intolerance is the CBT counselor I am seeing, who is quite certain that my symptoms are caused by depression and not food, needless to say, I haven't bothered continuing the discussion with her because it was quite clear after one session that she would not be swayed from her belief. Talk about inappropriate bias from a proffesional. I am quite sure that at large number of people with anxiety and depression could be helped by looking at what they eat!

My apologies for putting my post in the wrong section, I initially intended to ask friends and family how they initially reacted to discovering their loved-one had coeliac, but in my hazy, foggy, anxious state of mind didn't quite know what I was doing at the time

kind regards

Deanna

I would think about getting a new therapist. Yes, they "only" deal with emotional problems, but the good ones will recognize that physical illnesses can have things like depression and anxiety as symptoms, sometimes the only symptoms. In fact, it was a psychologist friend who first told me to consider vitamin deficiencies, perhaps caused by celiac or something else that causes malabsorption, and that he didn't believe that I ONLY had problems with depression/anxiety.

Something like that (that she doesn't believe that food intolerances can lead to symptoms, even after you told her that it does do that to YOU) is a major no-no for me in a therapist and a sign that they should be fired, if at all possible.

MCC0523 - I should have mentioned that I also follow the FODMAP diet - so something with very little fruit sounds good, but I'm also somewhat restricted in what veggies I can eat. The diet does sound worth a look, though it also sounds kind of expensive. I'm especially interested in what you say as my husband has POTS and ED syndrome, like you - however, he also needs a low cholesterol diet and it doesn't sound good from that point of view - do you have any thoughts on that? It's a struggle to cook separate meals - I'm the healthier one so I do most of the cooking but I can't do too much chopping, peeling etc.

I think that low cholesterol diet is a BAD idea long term... cholesterol is found in almost every cell in the human body, and it is what the myelin sheath which coats the nerves (and what is attacked in MS) consists of. If one doesn't consume cholesterol, then the liver makes it, so if the diet is low in cholesterol (or good fats in general) it can overtax the liver, and other bodily functions, reducing the absorption of Vitamin D (which is made by exposure to sun, but if there isn't fats, especially cholesterol, to help with the synthesis, then it isn't used as efficiently) and hormone production and it increases inflammation. Inflammation should be more of a concern with heart disease than lipid levels. Half of people who have their first heart attack have a NORMAL (or what the FDA says is normal) lipid panel. Lack of good fats leads to inflammation, and with EDS, inflammation is a given frequent dislocations and hypermobility. Since I've started eating this way, my knees are now a normal size (the first time in over 3 years), and my pain levels, which used to hover around a 7 on a GOOD day, hasn't gone above a 5 in 2 weeks, maybe longer.

Open Original Shared Link has a much, much better explanation of this than what I could ever do.

As far as expense, it doesn't have to be. I shop on the perimeter of the store, and I get whatever is on special with the meats, and I pick the veggies that I can tolerate. By going on special, I spent around 4 dollars for 8 lamb loin chops last week (that was the meat for 3 meals), and just under 6 for a pound and a half of salmon (4 meals). I am planning and preparing a garden right now, and for chopping and peeling, something like a Slap Chop or some other vegetable chopper and a potato peeler (mine hasn't seen a potato in a LONG time, though) are great for spending less time and energy on that part of meal preparation. And at first, I was worried about doing so much chopping and peeling, but I'm feeling better enough that it isn't a big deal as I feared it would be.

Try Open Original Shared Link for a primal based diet.

The "diet" (lifestyle or way of eating is more accurate) is meats, veggies, and healthy fats (coconut oil, butter, animal tallow are all great; processed vegetable oils {such as canola} and anything that has been hydrogenated is VERY bad). Fruits are a rare addition, although if someone is doing heavy training, say for a marathon, then it might be consumed more frequently. All grains, legumes, and sugars are discouraged if the lifestyle is followed strictly.

ETA: As far as energy goes, as long as you get a good amount of good fats, then you'll have wonderful energy levels, without the peaks and valleys that comes about with eating a carb heavy diet. I've been eating like this for the past few weeks, and I have to say that my reactive hypoglycemia has completely gone away, and I don't have periods of exhaustion. I do get tired, but one of the things that I like about this lifestyle is the notion of following the signals of your body... so if I'm tired, I'll rest. But I don't have to rest for several hours at a time to see results. Sometimes, all I need is a 30 minute nap and I'm back to full force.

ETA 2: A typical day of eating is 2 jumbo eggs and 2-4 servings of veggies (this morning was asparagus and brussel sprouts), and a serving of meat (usually chicken, bacon, or whatever was left over from the previous night's dinner) for breakfast. I'm not hungry at lunch normally (only on days that I'm more active than most) so I don't eat then, but if I do, it's a smaller version of my dinner. For dinner, it is a good portion of meat, and even more veggies, or a salad with mixed greens for the lettuce. Unless the veggies are raw, I will cook all of my food in coconut oil or butter, and if I'm having salad, my dressing more often than not is the left over butter or coconut oil used to cook my food.

NO ONE says that you can't have celiac disease..no one says that you don't have a food allergy or intolerance...but for people on this website that declare they have celiac disease..without being tested..or doing the entrolab thing...is ridiculous!

Of course you can feel better with out eating wheat...but don't go around telling people that you have celiac when you don't. Or when a doctor saying" um...you don't have celiac.." and then those poor people that want a disease.. say well, maybe my doctor doesn't know what it is..or just doesn't want to diagnose me...or whatever the reason is this month...it is not true. You don't have it. You probably have an intolerence ...that is fine...declare yourself gluten free...but not celiac...

What is ridiculous is your seemingly blind faith in the medical profession. Plus, what part of 30% false NEGATIVE rate of the "Gold Standard" tests don't you understand? That means that there are 30% of the people who have been tested for Celiac and told that they don't have it that ACTUALLY HAVE IT!

Of course you can go around and trust the medical profession to always take care of patients, but as someone who slipped through the cracks for almost 25 years, don't go around and tell me to trust the medical profession when they are not trustworthy!

I am looking into getting a dorm fridge... However, I'm not sure if I want to buy one now, since I'm most likely to move out.

I am an adult, who is keeping my parents from being in a financial pickle by paying them rent to live here. I would rather not move out, because I know that would be detrimental to them, but I can't handle being glutened at least once a week, in my own home (I don't eat out) and I'm REALLY careful (washing my hands after I touch anything that could potentially be a source of contamination, washing my dishes by hand and rinsing them for at least 15-20 seconds, using plates instead of counters to prepare food, etc.). It may be their kitchen, but as I'm paying for use of it, it should be in such a condition that it not going to make me sick. Since gluten makes me sick, then it should be gluten free. Or I'm not going to use their kitchen. Which means I'm not going to eat, because I don't eat out... so the only option is for me to move out.

I've tried to talk to my mom about this, and to say that she is resistant is an understatement. My dad is more supportive, but is unable to counteract my mom's strong personality when it comes to things like this.

I got glutened from my dad, who wiped his hands, but did not wash them (or even rinse thoroughly) after eating a doughnut before he reached into a bag of my almonds (that I later ate). I am working on my parents into making at least the kitchen gluten-free, and not physically interacting at all with my mom, as she insists upon wearing Aveno products (and she touched my hand after putting on lotion, and I broke out in a rash only where she touched), and pretty much making my dad scrub for surgery before I'll do so with him. I also reacted BADLY to an apple that was cut with the same knife that had cut sandwiches before hand. Both of these, I didn't find out the source until afterwards.

So, I was wondering if there were other people who were super sensitive who lived in a non gluten-free household. Do you have any further tips to keep me from getting glutened? I have so much anxiety at my own house because, although the wheat bread that is used for sandwiches is made on a plate and not directly on the counter, my parents are very messy and will still leave crumbs. I'm so tired of having to wipe down the whole kitchen before every time I cook something, and I am the only one I trust to do my own dishes, as my mom is terrible about leaving residue on plates. The few times my dad had done them, his picture has been taken.

Am I wrong to want, at the VERY least, to want them to make it a gluten-free kitchen, especially since they have made me sick already? I don't want them to never eat it again (well, I do, because I think they could benefit from going gluten-free), and if they want to bring home glutened take-out, they can eat it in the dining-room. They could also make their sandwiches, and put their glutened crackers in their glutened soups there, too.

I am a musician, currently training to be a church organist. I've previously had voice and piano training, plus 7 years of band in school. I don't know exactly what I want to do with music, but it is more important to me than most anything else. I'm especially fond of Gregorian Chant, and sing with a Gregorian Chant Schola every Sunday.

I am a Trekkie and I know enough random Star Trek facts to completely blow anyone else out of the water were I on Jeopardy and it was one of the categories.

I'm glad that I've had to go gluten-free and cook most of my food, because I have discovered just how much I LOVE cooking! I think it would be neat if I could open a "Naturally Gluten-free" restaurant... if it didn't interfere with music, that is.

Get a new doctor. Doctors work for you, you (and/or your insurance) pay them. If they aren't providing the services that you are paying them for, fire them.

I'm sorry you've seen such a jerk. They are many of them out there, unfortunately. Perhaps there is a local Celiac support group could give you the name of a good Celiac knowledgeable doctor.

I've had "possible MS" mentioned to me, by doctors and other MS patients. I had the "walk", stiff and shuffling of feet. I have a borderline-Chiari malformation, which can cause symptoms that are similar to Celiac/gluten-intolerance, and if I hadn't gone gluten-free, I would have probably had surgery by now. I'm so glad that I had others in my life talk about their own issues with gluten, and eventually convince me to try it, just try it for a few weeks, and see what happens. And I am NOT going back on gluten, not on purpose (I've been cc'ed yesterday... oh I forgot how much the stomach pain SUCKED!)

I have been talking about Celiac and gluten-sensitivity to others. I know my parents could benefit greatly from a gluten-free diet... plus they wouldn't be as likely to cc me. My best friend has gone gluten-free, and he hasn't felt better in years. He is also trying to convince his parents to do so, as they are VERY addicted to the stuff. I'm sure I annoy people... "Oh no, it's the "gluten-free" girl again! Run, HIDE!" But I hope to at least plant seeds, like others who have had Celiac/gluten-sensitivity have done for me in the past.

I would like my whole kitchen to be gluten-free, but as I live with my parents, and they still eat gluten, I wash dishes now at least two or three times as I wash everything after I use it, and then before I use it again, as I don't trust my parents to yet not cc me, and they use the same dishes. I am feeling better and my gastric symptoms have pretty much disappeared, although I still want to get a whole set of new dishes to be declared gluten-free, and separated out from the rest of the kitchen.

I have been talking to my dad and several of his symptoms he's had his whole life that I'm sure are related to him eating gluten... just bringing it up here and there. I've heard a few mumbled "maybe you're right" and a quick change of subject. He is addicted to crackers and bread most of all, and I don't think he is mentally ready to go gluten-free. I keep talking about how great I feel, and I mention I think he'd also feel better if he would just try it, and how I didn't think that it would help when I went on it, but as my other option before going gluten-free was surgery, I hoped that going gluten-free would relieve the neurological symptoms that could also be attributed to my chiari malformation (it's a borderline one, but those also cause terrible symptoms) I've been plagued with for the better part of 5 years. I might still have to have surgery, but I have no doubt just with how much better I feel already that gluten is a bad thing for my body, and if I have to have it then, well I'll be much healthier and more able to withstand having the back of my head cut open by the time I make that decision (I'm giving a good year to see how much reverses).

I was anemic. I'm a human yoyo and I think it was due to undiagnosed Celiac disease. In 1998 I was a size 4. In the Fall 2001 (age 26)I was a size 8. By Spring I was a size 2. I started gaining in the Fall of 2003 and got up to a size 12 before losing again. Spring 2007 I was a size 4 again but by Fall I was once more a 12 then I slowly creeped up to a 14. Since going gluten free in November I've dropped back to a size 8. Sorry I didn't keep up with the actual weights I know prior to 2001 my weight had always been between 117 and 128. (to give you a sizing frame of reference I have always worn Victoria Secret Jeans.)

This last gain I was always very hungry. I often ate Cereal for breakfast, a box of Shells and Cheese for lunch and two grilled cheese sandwiches for dinner, not to mention cookies for dessert.

(PS I think I left one gain and loss out somewhere)

Perhaps the times and sizes are a bit different, but this is very similar to my whole gain/lose history, too.

I was anemic the last blood draw, with no niacin in my blood the last time it was tested (and many other things were really low).

I have stopped weighing myself for the past few years, but I have had to keep a range of clothing sizes, from 6-14. One time, I got up to a size 16. My weight started fluctuating so much from month to month that I have started wearing elastic waisted floor length skirts all of the time as it helps to hide the fluctuations (and then I realized that I like skirts much more than I ever liked jeans).

At one point, I was SOOOO hungry all of the time, and I ended up binging for the better part of a year, at least a sleeve of crackers, a whole box of cereal, mac and cheese. I was also sick to my stomach all of the time. Before I went gluten-free, I had endured over a decade of throwing up at minimum 2-3 times a week. Since going gluten-free, I haven't thrown up once.

My stomach has been distended for many years, and I'm sure that it is related to how malnourished I've been. It's not gone down as quickly as I'd hoped after going gluten-free (but I've only been so for around a month), it is somewhat smaller. My joints aren't as swollen, either.

I'm grateful that I was able to hike earlier 2.5 hours in the woods. A feat that was impossible 2 months ago, that I had given up for good (that was such a horrible night when I told my best friend that I would never be able to do that again... I actually cried over that). I went gluten-free a month ago, and I can already tell such a difference in how I feel. In general my energy levels are starting to pick back up again. I can now gladly give up beer (the only thing I still wasn't OK with giving up before this hike, actually) and I do mean gladly! I love hiking much more than I could ever love beer (and that's a lot).

I'm grateful that my friend is going gluten free (actually, I've been following more of a primal/paleo diet, and now so is he) with me, and that he is starting to feel a difference in his health, too. I've suspected that he has had problems with gluten for awhile, and that he was able to hike with me today is a good sign (since he's been gluten-free for awhile, too) that gluten is not his friend, either.

I'm grateful for people where I go (school and church) that make sure my needs are taken care of, but do so in a way that makes me feel normal.

I'm grateful that it's not all "in [my] head", that I'm not completely losing my mind. I knew that I wasn't when it appeared that I was, but I couldn't convince others of that for a long time. I now have my parents in my corner (as best as they can right now... but they finally know that I'm not going crazy), and I even have a few good doctors that believe me and actually listen to me, not cut me off mid-sentence and just shove pills my way that was just dropped off by the pharmaceutical rep. One actually told me that me not throwing up since the day I went gluten-free was a pretty good sign, and it seemed like my body was telling me something and I should listen to it.

There are so, so many more things that I'm grateful for, some even more than what I listed here.... I wish I'd gone gluten-free much, much sooner.

As I have been a coeliac my whole life, i have never tried beer though the smell of it would put me off anyway. I am a cider girl, love it especially scrumpy.

However I am sorry that you have had to give it all up, I never know if I'm better never having tried anything, therefor not knowing whether I'm missing out or whether you are luckier as you had it for so long....mystery question

However I am sure that as making gluten free beer is relatively new that somewhere along the way they will achieve better stuff, it has taken them a long time to get bread to a good standard so I am sure that they will achieve this for you!!!!

It is difficult to know which one is lucky... both of us are, I suppose, because we know what makes us sick and how to avoid it.

I am hopeful for the future of gluten-free-beers... and you're right, cider is pretty awesome.

I am also hopeful that in a few years, there will be at least one good gluten-free beer out there. If not, I can learn to love cider as much as I do beer.

NOW WE ARE BROKEN UP. I miss Guinness. My goodness, my Guinness. I miss it SO MUCH and I don't dare even have a tasty sip because I know what it will do to me for the following week.

You are not alone in your ranting against gluten-free beers. They are not the same. For those of us with a real beer love, gluten-free is just fourth-rate nonsense.

I understand not having even a sip... *sigh* I guess I need to start looking into alternate grains, and use my current brewing knowledge and come up with a good alternative. I've been especially missing my IPA, so I could come up with something that uses A LOT of hops. I wonder how brown rice does in beer, too. I can't think of anything to take the place of a stout right now, but I want to come up with a good gluten-free stout recipe.

I miss going to Hooters and having a big 'ol platter of hot wings and a big frosty mug of Fosters on tap!

I am more of a fan of Wild Wings Cafe, but I appreciate the combination of wings and beer. It was fun while it lasted.

i was never a big beer person.. only had it maybe 2x a year... but i used to love snakebites..

went out to World of Beer recently- i tried the Redbridge- it was barely do-able, i dont think i even drank half of it , it was that bad YUCK.... so i stuck with Woodchuck Cider all night- totally YUM... my only complaint was i would of preferred a frosty mug, or the tap to be colder

ps- i am BUMMED tho- that gluten-free cider &/or beer isnt everywhere... like the next time i go to a sporting event or a concert- gonna be a real bummer that i cant just go get a beer

The only beer that I threw out within the past 2 years WAS a Red Bridge. And I tried... I really, really tried to like it, but it's just not going to be possible.

Woodchuck is GREAT! Magner's Hard Cider is good, too, and I recently found two other gluten-free ciders at my favorite beer market. They do have other gluten-free beers besides Red Bridge, but the owner (whose taste in beer I trust) stated they weren't very good at all.

____________________________

I guess I'm just going to have to come up with some gluten-free beer recipes. I'm actually kind of excited about researching to see what sources of fermentable sugars I can use. I know that hops are safe (although I'm sure cc is an issue sometimes), and I am curious what brown rice, buckwheat and other gluten-free grains would be like.

With Ehlers-danlos syndrome, which causes joint pain, it's not uncommon to also develop Celiac/gluten-intolerance (I'm a member of several chronic illness message boards, and it's surprising the people who have both EDS and Celiac). If you have a history of being hypermobile/flexible in your joints (even if they aren't now... ironically hypermobility can turn into extremely stiff joints later in life due to joint damage and wear), and also have skin issues, like it is stretchy, very soft, and you get atrophic or cigarette paper scars, you should look further into this. There are further complications that can sometimes occur with EDS.

[rant] Before figuring out that gluten has been causing such horrible symptoms in me, I used to be a beer aficionado... as in, I had my own dedicated beer glass that was NEVER washed with detergent (as it affects head retention), I was able to detect undertones and high notes and all of the fancy terms "real" *snobs* use in describing the experience, and the highlight of my year was a certain beer festival. I had even started brewing my own, and was planning another brew before I learned I must avoid gluten.

And, yes, I know about Red Bridge and other gluten-free beers, but I'm sorry, it is NOT the same. Red Bridge cannot match the fullness of a Samuel Smith's Porter, or the citrusy notes of a Sweetwater IPA, and DAMMIT, I'm SO MAD that beer makes me so sick. My favorite seasonal last year was Sam Adam's Noble Pilsner, and I nearly lost it when I saw it out again (the first time this year) last week at the store.

*SIGH* I will be alright with this... eventually. Just not right now.

[/rant]

Have you had your vitamin levels checked? Low B vitamin levels can lead to numbness and tingling in the extremities.

Itching is a known side-effect of aspartame. It is number 16 of the FDA's list of known aspartame side-effects.

I'm the shortest one in my family, besides my mom. Dad is 6'2", Mom is 5'4", youngest brother is 5'10", oldest brother is 6'5", and my sisters are both 5'11". I was 5'6" at my tallest, but I'm now down to 5'5", and I'm only 25... I have osteoporosis, so the height loss scares me a bit. I hope that I'm able to reverse some of the bone loss just by being able to absorb vitamins and minerals again now that I'm gluten-free.

My gallbladder was taken out almost 5 years ago in October of 2006 at age 20. I, too, had no stones, but I had symptoms since I was at least 15 years old (throwing up constantly and horrible stomach pain... although that could have been from eating gluten my whole life at that time). However, according to all of the GI doctors I saw from age 15-20, I was suffering from an immense amount of stress, so much that my body actually created my symptoms. Riiiight!

They found no stones in the multiple ultrasounds and CT scans and MRIs they ran at the time. No doctor thought to see how my gallbladder actually WORKED, they were too busy looking for structure issues (like stones blocking up ducts). Finally, after 5 years of HELL, one doctor decides to order a HIDA scan (I don't know the functioning level, but it's enough for him to immediately say I need to have it removed). It's, unfortunately, the same GI who now keeps stating emphatically that I have IBS and Barrett's esophagus, and refuses to check for celiac, even though I have EDS, which makes me a higher risk. Oh well, I just have heard of another GI in my area, who isn't in the same office as her, who is speaking at my local area's upcoming gluten-free vendor's fair, and he's in-network on my insurance.

I am not sure how long that I've been sick, but I do remember having stomach aches that made my mom take me to the doctor when I was 7 or 8 years old... it must have been long enough to take out my gallbladder, at least...

Your recurring rash sounds like Dermatatis Herpetiform (DH), a skin manifestation of celiac disease. If, and only if, you WANT the diagnosis, you could eat enough gluten to cause the rash to come back, and then have a dermatologist biopsy NEXT TO (not on) a blister.

How long have you been gluten-free? If it's fewer than 3 months, you MIGHT have enough antibodies to show up on a blood test. Probably haven't healed up from the damage yet, either, so a biopsy MIGHT show something. But, you know your body... you know how much better it feels off gluten. Unless you're worried about needing to have the official diagnosis for... well, I'm not sure for what, I wouldn't pursue it.

Fruit ciders are another good substitute for beer. I know that Magner's Hard Cider is made from apples and is really good. Pear ciders are very nice, as well. Not all brands are gluten-free, so make sure to research beforehand... however, it seems more are than not.

That's nice to know about the "gluten-free" beer. I shall make sure to avoid it.

I was first diagnosed with the POTS, a year ago. Then just this past November, it was EDS. In December, it was severe osteoporosis, and now, it's severely malnourished and gluten is a problem for me. I am sure I have at least one other food sensitivity, although I'm not sure what it is right now (although dairy is certainly out right now).

I'm excited to hear that I may see a decrease in subluxations and dislocations and pain as long as I keep a gluten-free diet!!! It's been SOOOO unbearable these past 3 years especially, although I've had pain my whole life. I hope that bringing up my Vitamin B levels will help with nerve pain, too.

I wish I could tell you... I'm in the same boat myself right now. My last GI doctor dx'ed me with Barrett's esophagus 10 months ago, and refused to check me for celiac when I asked, sticking with her IBS diagnosis. The IBS pamphlet in her office basically included a line stating that patients who have IBS might think they have other things and requested to be over tested.

I finally have found a neurologist I like and am even impressed with his knowledge. At my next appointment, I'm going to ask him if he can refer a good GI doc.

I just found Celi-Act, a Knoxville based celiac support group. There is an online google based group for members. They also meet in person every other month, and there is a Gluten Free Vendor's Fair coming up in March!!

It might be worthwhile for you to follow an elimination diet, after you get your vitamin levels checked out first, at the VERY least your Vitamin D and B Vitamins. In my case, I was tested to have no detectable niacin in my blood, a very low Vitamin D level, and a few other things that are low normal/borderline low, including the tTG IgG and IgA levels. Mega-supplementation is VERY important if you're in a state like that. The brittle nails and always being cold are symptoms of vitamins B and Vitamin D deficiency.

It also seems you may have multiple food sensitivities, and until you figure out what ALL of them are, and avoid all of them (especially gluten), you won't have a complete recession of symptoms. However, the fact that you're starting to see results and improvements already is a good sign that you're on the right track. I've also been given the IBS diagnosis in the past. If your current doctor won't consider anything else... well, you're the one paying for service, and if he doesn't deliver, fire him. There are others.