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    Do you have questions about celiac disease or the gluten-free diet?

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Alright, I’m going to try and keep this as brief as possible because I have a tendency to type a lot (I’m an aspiring novelist, what can I say). If you don’t want to read everything, you can just skip down to the questions at the bottom, but I would appreciate any input on my situation if you have the time.

I have had medical problems for years, most notably headaches. I have pretty much had a headache every day since I was 21 or 22 (25, nearly 26 now). I have seen multiple neurologists, multiple endocrinologists, a dermatologist, chiropractor, allergist, and nutritionist in the past couple years. I’ve been on and off medications for years (the majority for headaches): Depakote ER, Fioricet, Tylenol with codeine, Tramadol, Verapamil, Allegra-D. I chose to come off all daily medication recently and only take headache medication upon severe headaches (a couple times a week currently).

I’ve had 2 MRI’s, a glucose tolerance test, and I tested myself for a while with a blood sugar kit. The MRI’s showed nothing, and at most, I’ve been diagnosed with reactive hypoglycemia from my blood sugar testing. I thought it was odd that I was always on the low side but never really too low but who knows.

For years, headaches seemed to be my primary symptom along with the accompanying confusion and inability to focus and think. And general fatigue as well. And I also seem to dip up and down throughout the day, with post-lunchtime generally being my worst point of the day. I’ve also been depressed through this whole ordeal though I’m trying to stay optimistic. In the past year or so, I have had leg pains, which have become progressively worse to the point that I stretch every single morning, multiple times during the day, and every night, and it’s become painful to sit for a while. I’ve also had back pain/discomfort for a while. Overall, I’ve struggled through work and my life outside of it for the past couple years.

I had some weird skin rash break out 2 years ago (I don’t believe it was DH). It started on my stomach and spread to my arms and legs. I forget the name of it offhand, but the dermatologist said they don’t know what causes the condition, and it went away after a couple months. Oddly enough, I still get one quite small, dry rash (usually on my legs) every couple months. The rash is somewhat itchy and will last for a couple months, but I pretty much only get the one little rash at a time (and I think it’s moreso during the colder months of the year). I have gastro issues as well though I think I disregarded them for a while. They seem to have become worse recently, or maybe I just pay more attention to them.

As far as my childhood goes, I was a mess when I was a kid. I had ear infections all the time, and I ended up having 3 operations (mirongatamies to put in tubes for my ears, which I had for 6 years total). I had 3 cases of chronic non-specific diarrhea, which caused me to lose 10-20 percent of my body-weight each time. I didn’t gain weight for 3 months in my first year. I had allergy shots for 7 years and tested positive for just about every environmental allergen. I was lactose intolerant as well. I had leg pains all the time, which were diagnosed as growing pains, in my early teenage years. I also have eaten a ton of food for my size as far back as I can remember. I had to get permission to go to the nurse’s office and eat in the middle of the day one year in middle school. I weigh a buck forty now (I’m 5’10) and have to make an extremely conscious effort just to maintain my weight.

As a sidenote, my sister (2 years younger than me) makes my medical problems look like a fairytale. She has RSD, pancreatitis (pancreatic divism), IBS, gerd, multiple tumors, and had lymphodema among other issues and has been on medical leave from college for years. It also probably bears noting that my father was stationed in an area that was heavily sprayed with Agent Orange when he was in Vietnam.

To make things even more interesting, I just learned earlier tonight that my dad’s first cousin was diagnosed with celiac disease a while ago. My dad’s cousin’s mom died from diabetes complications, and my dad’s father also had diabetes.

I had a blood test done for gluten antibodies a couple weeks ago, and it came back negative. I know bloodwork for gluten is often negative despite existing intolerances. Furthermore, I had gone on an elimination diet for a short time in early December and have been on a quite low-carb diet (extremely little pasta, minimal bread, very rarely cereal, minimal alcohol drinking) for a long time (maybe a year or so). I don’t know if this could have really affected my bloodwork. I always thought it was the carbs that gave me problems before I learned that it could potentially be gluten. I also seem to react very negatively to even a single beer in the past couple years, whereas I used to drink heavily multiple days per week in college and feel okay, considering things.

I started the gluten-free diet officially a week and a half ago and have been as strict as possible in regards to what I eat (shopping at Whole Foods and Wegmans with no eating out). I’m trying to minimize other potential food allergens and may have to eliminate a number of them soon. I had an allergic reaction to something within a couple days off gluten, and my body broke out in a red, itchy rash, which went away after some antibiotics. I’ve also started taking Ester-C, a multi-vitamin, fish oil, and calcium-magnesium daily.

Alright, so here are my questions:

1.) I know self-diagnosis is an iffy thing, but it sounds as if celiac disease/gluten sensitivity is a good possibility for me, correct?

2.) For those of you with multiple food allergies, do your other food allergies cause the same symptoms or only some of the same symptoms? For instance, I am suspicious of dairy (among other things), but can dairy cause headaches, brain fog, leg pain (from malnutrition) or just gastro symptoms?

3.) Is it realistically possible that I am not allergic to gluten but have other food allergies causing my whole array of symptoms? Or is gluten pretty much the one staple, with other food allergies contributing to the problem?

4.) Assuming I am indeed allergic to gluten, will I start feeling better simply by eliminating gluten even if I have other food allergies? Or do I need to eliminate all foods I may be allergic to in order to even feel slight improvement?

5.) How long should I expect it to take on a gluten-free diet before I start feeling significant relief from my symptoms? If I accidentally consume gluten, will this set the whole process back or just inhibit me for a couple days?

6.) How much lamb can you safely consume per week? I am trying not to solely eat chicken for protein and substance, but I’m leery of turkey, ground beef, and eggs (as well as cashew butter, peanut butter, and soy) and am trying pork tonight for the first time in a while. I tentatively seem to be alright with lamb, but don’t want to overeat it and/or develop an allergy to it.

7.) I am going to a different nutritionist tomorrow to discuss delayed food allergy testing. Anything I should ask him regarding their testing procedures?

Alright, thanks for any advice. It is greatly appreciated.

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WOW, sounds like you have been through a lot of health problems...for your sake, i really hope the gluten-free diet is the solution to many of your health issues!!! (aspiring novelist? your life seems to tell quite a story!) :P I definitely cant answer all of your questions, and i dont claim to be the most knowledgeable on celiacs (someone else will probably pipe in with an intelligent answer soon enough, but for now i'll just offer my input)

First, i just want to note that everyone seems experience a different range of symptoms with celiacs- there is very little research that proves what is or is not related to celiacs, so the headaches, hypoglycemia, etc. could improve w/a gluten-free diet, but wont necessarily. I also thought it was interesting to point out that i was diagnosed w/ RSD in high school - never knew anyone w/ it before! and my mother has diabetes, my moms dad died from it as well...just a few common connections. ok onto your questions:

#1) yes, it is certainly possible that given the way you have reacted to a gluten-free diet, you may have celiac or gluten sensitivity. i would encourage you to give it a little more time and see how you feel after a few weeks, b/c your body will take a while to adjust and to rid itself of all the gluten.

#2 through 4) I dont have other food allergies, but my understanding is that it is not the same symptoms as gluten sensitivities. However, these questions did confuse me b/c i wasnt sure if you were implying you might be allergic to gluten or wheat in addition to celiacs? Do you know the difference between a food allergy and celiacs/sensitivity? Also, if you eliminate gluten, you may find you have other intolerances or allergies but since its only been a short time, it is probably too early to tell. In all likelihood, you are still reacting to the gluten in your body.

#5) I started to feel better after only a few weeks, but everyone is different. Some take as long as 6 months to a year. Accidental glutenings also affect people differently, but for me it is usually just a few days setback (though my accidents dont involve massive amounts of gluten, like a slice of pizza or something).

#6) I'll defer on the lamb question- this is not my forte!

Good luck, i hope you feel better--- and welcome to the board!

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Guest nini

all I can say is yep, sounds like Celiac or at least Gluten Intolerance, many people with Celiac and or Gluten Intolerance are also lactose intolerant at least initially, and also have other food allergies.

If you are comfortable with self diagnosis, go for it. Give the diet 100 %. There is no right answer for how long before you truly feel better, the AVERAGE seems to be about 2 years IF you are 100% gluten free...

The best way in my opinion to determine if you have other food allergies is an elimination diet. Take your diet down to the very basic minimum and then slowly one food at a time reintroduce foods into your diet and monitor your, if any, reactions. Google elimination diet for more insight in how to do this.

RE: Gluten Allergy vs/ Intolerance also in my opinion, what's the difference? In both cases the answer is avoid the offending grain.

re: accidental glutenings affecting recovery... while I don't think accidental glutenings set your recovery back to square one, you are not doing yourself any favors by not being extremely vigilant about it. That being said, many of us, if not all, make mistakes on occasion and accidentally gluten ourselves.

after a period of time being off of gluten, I say give it at least 6 months, reintroduce gluten and see what happens. Some people don't notice reactions right away (or at all) even if they do have Celiac, so you kinda have to follow your gut (pun intended) on this one.

good luck. I hope I made sense as I'm not quite awake yet.

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1.) Self-diagnosis happens fairly often with gluten intolerance b/c the medical practice really only recognizes classic Celiac Disease at this point, and those with negative results are told they can eat gluten. Research is still very new at this point, but some studies show that those with negative results can still be gluten intolerant and suffer from different organ damage. If your tests are all negative, but your symptoms show marked improvement minus gluten, that's all you need.

2.) I have a host of intolerances, some give noticeable symptoms, many do not. Mine are primarily GI, but headaches are also a result. Dairy is a very very common culprit for many people, esp. Celiacs. I am casein/dairy free.

3.) It is hard to say. You need to really track your diet and reactions. Start a food symptom journal...if you keep one you should be able to correlate a food or foods to symptoms such as your rash.

4.) Also, it is hard to tell. The understanding of these things is still new, and so far can vary person to person. The research just isn't definitive at this point I think. I would guess though that if gluten is your main problem, eliminating it should provide some relief intially, even in light of other intolerances. Another idea is to get a food intolerance test. There are several places that do that.

5.) Usually people notice some improvement at the beginning...but it can take 1-2 years for someone to really feel "normal" again. I think that is especially that case for those who have symptoms like fatigue and pain. I have been gluten-free for about a year. I'd say the past 2 months I started to feel like I am turning a corner as far as energy goes, but I still have a long way to go.

6.) That's not a scientific question really... Generally speaking, to help deal with or prevent food intolerances from developing when you have a leaking gut, alternate foods throughout the week. I'm not saying this is the "right" number, but the only number I've ever seen is to not eat a food more than 4 times a week. You'll have to decide on that one.

7.) Quiz them on food intolerance/delayed allergy testing (IgG) vs. classic allergy testing (IgE). You may want to have both done, but the IgE will not help you if you are looking for intolerances, the former.

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Your story is so familiar. Lots of things going on, continually barkinig up the wrong tree, so to speak.

But you are HERE, so you are probably on the right track finally. Eventually all the pieces will probably fall into place and you'll realize all roads were leading to one (or more!!) thing.

RESPONDING TO YOUR QUESTIONS:

1.) I know self-diagnosis is an iffy thing, but it sounds as if celiac disease/gluten sensitivity is a good possibility for me, correct?

YES, VERY POSSIBLE. VERY LIKELY, IN FACT. YOU MAY HAVE MULTIPLE SENSITIVITIES....MANY DO.

Plus, gluten & casein sensitivity are very commonly found together.

2.) For those of you with multiple food allergies, do your other food allergies cause the same symptoms or only some of the same symptoms? For instance, I am suspicious of dairy (among other things), but can dairy cause headaches, brain fog, leg pain (from malnutrition) or just gastro symptoms?

I ALWAYS SUSPECTED SOME KIND OF DAIRY PROBLEM, BUT NOT WHEAT, EVEN THOUGH MY MOTHER IS CELIAC. MY DAIRY REACTIONS WERE FAIRLY QUICK AND IDENTIFIABLE, AND BESIDES THE USUAL DIGESTIVE DISTRESS ETC. I HAD MIGRAINES FOR 20+ YEARS. I ALSO HAD BRAIN FOG, LEG & BACK PAIN, GASTRO STUFF, ASTHMA TYPE SYMPTOMS, STUFFY NOSE/POST NASAL DRIP, NAUSEA, & MORE.

I LEARNED I AM CASEIN SENSITIVE TOO, AND WAS TOLD THE DAMAGE FROM THAT TO THE INTESTINE COULD BE AS GREAT AS DAMAGE FROM GLUTEN. I SUSPECT I'M EQUALLY SENSITIVE TO SOY.

3.) Is it realistically possible that I am not allergic to gluten but have other food allergies causing my whole array of symptoms? Or is gluten pretty much the one staple, with other food allergies contributing to the problem?

GLUTEN & DAIRY FREQUENTLY OCCUR TOGETHER. PLUS OTHERS....OTHER CULPRITS ARE SOY, EGG, YEAST. POSSIBLY OTHER THINGS TOO. YOU NEED TO IDENTIFY THE MAIN ONES FIRST, THOUGH.

4.) Assuming I am indeed allergic to gluten, will I start feeling better simply by eliminating gluten even if I have other food allergies? Or do I need to eliminate all foods I may be allergic to in order to even feel slight improvement?

YOU'LL FEEL BETTER ONCE YOU IDENTIFY & ELIMINATE ALL SOURCES OF THE OFFENDING FOODS. FOR ME, IT'S A PROGRESSION. ELIMINATION OF GLUTEN HELPS ENORMOUSLY. ELIMINATING DAIRY AND SOY IS EVEN BETTER. I STILL NEED MORE TIME BEFORE I COULD SAY HOW LONG TO FEEL GREAT, THOUGH.

5.) How long should I expect it to take on a gluten-free diet before I start feeling significant relief from my symptoms? If I accidentally consume gluten, will this set the whole process back or just inhibit me for a couple days?

FEELING 100% BETTER MAY TAKE TIME. I FEEL BETTER WITHIN A WEEK BUT STILL NOT 100%. IF I EAT SOME GLUTEN, DAIRY OR SOY, EVEN SMALL AMOUNTS, I'LL PROBABY FEEL CRUMMY FOR A COUPLE OF DAYS, AND THEN I'LL BE BACK ON TRACK.

6.) How much lamb can you safely consume per week? I am trying not to solely eat chicken for protein and substance, but I’m leery of turkey, ground beef, and eggs (as well as cashew butter, peanut butter, and soy) and am trying pork tonight for the first time in a while. I tentatively seem to be alright with lamb, but don’t want to overeat it and/or develop an allergy to it.

I'VE BEEN TOLD THAT 2 THINGS PEOPLE ARE RARELY ALLERGIC/SENSITIVE TO ARE LAMB & RICE. IF YOU ARE DOING AN ELIMINATION DIET TO IDENTIFY ALLERGIES, THAT IS OFTEN A GOOD PLACE TO START, WITH THOSE TWO FOODS.

7.) I am going to a different nutritionist tomorrow to discuss delayed food allergy testing. Anything I should ask him regarding their testing procedures?

GET THE BOOK "DANGEROUS GRAINS." Then see how much of what is in that book the allergist knows. If he/she knows less than you, run for the hills and take things in hand yourself. I decided not to waste my $$$ with doctors who would spend my $$$ ordering useless tests as they rummaged around trying to figure out things. I guarantee you your allergist won't ever have heard of stool testing as a method of identifying gluten/celiac. It makes more sense to test the stool, however. The reactions occur in the intestine, after all. The blood test depends on your having a leaky gut, which then allows the gluten proteins to pass thru the cell membrane and into the blood, where the reaction with antibodies then occurs. If you aren't eating gluten, or not eating much gluten, you may not show any reaction.

Go to www.enterolab.com and read all the info there. I ordered their complete panel and learned I had both the celiac and the gluten sensitivity gene, that I'm politive for gluten and casein antibodies etc., and I'm probably going to get further tested for eggs/soy/yeast. In the end the cost of this (for me, anyway) will be FAR LESS than going the clueless doctor route endlessly.

People (including most doctors) are resistant to the idea that offending foods can affect the body so extensively. Gluten/dairy/soy and possibly eggs/yeast too cause HUGE problems in millions of people but these foods are so pervasive in our foods that NO ONE wants to face facts and give them up. You have to really wrap your brain around these ideas and come to accept that your former way of eating has to really be revamped. But it is more than just feeling well.....the negative health results of ignoring these sensitivities should not be understated....and the risk of various cancers to the untreated/undiagnosed celiac can be from 40 to 100 times greater than that of the non-celiac. If that doesn't scare you into compliance with the diet I don't know what will. Many people with serious autoimmune diseases (how about multiple sclerosis to name just one!) also turn out to have undiagnosed celiac. It's harder to regain your health once autoimmune diseases kick in, so the idea is one of PREVENTION. If you are gluten and dairy sensitive, for example, which you may well be, you need to get these two out of your diet forever NOW, before you come down with something else which can't really be fixed at that point.

Carole

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Thanks for the replies and advice. I'm going to maintain the gluten-free diet for a while, see how things go. I'm also likely going to eliminate some other foods (dairy, soy...) for a while. I plan to avoid going on a strict elimination diet for an extended period of time if possible. I also will likely do the delayed food allergy testing (the nutritionist I saw today sends samples to York labs). I'll read up more on that first though.

mookie - sorry to hear you have RSD... if you don't mind me asking, how have you pursued treating it? I know my sister has tried numerous things and is currently on way too many medications and has had way too many surgeries and procedures (5 day ketamine infusion in NYC, multiple 5 hour transfusions of ketamine, etc.)... also, did going on a gluten free diet help with the RSD? my sister is currently seeing a new doctor who is proposing a diet having to do with acidity versus base consumption.. if you want to email me instead of posting here, my email should be available if you click on my user-name... thanks...

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Wow - I so recognize my own symptoms. Only I'm 45 & have been doing this since I was your age. It started with my hair falling out, then lactose intolerance then headaches then TMJ & more migraines. I could never get off the couch I have been so tired. so tired. Then I started vomiting & getting dizzy spells. Then freak body pain, depression, lypoma (fatty tumor), toe then partial numbness in foot (that's how we found the lipoma) but by then it was both feet & both hands & my chest & my arms. Then nerve tingling up my legs then foot pain so severe I could no longer walk or stand. I did every know foot therapy & saw neurologists & dermatologists & reumotogist & cardiologist. I would say again & again I am not ok. At that point no one cared that my left abdomen always hurt and that I had alternating d/c - that was the least of my problems. Ultimately I begged for a wheel chair & they put me on neurontin/gabapentin - which allowed me to walk again. When the breast cancer was finally diagnosed I thought hallalujah I told you I was dying. Now everything will be better or I will be dead.

In hindsight, I think the chemo seemingly rebooted my entire GI track. It kills hair cells (why hair falls out) & it kills the gi from mouth to the other end, because those are the fastest growing cells in our bodies (i.e. cancer cells). The docs warned me that if indeed I had an auto immune disease that it might enjoy chemo. I was too sick to notice. But during radiation all the symptoms kicked in again. Except the migraines never really left anymore. - I became more depressed than ever. 2 years later. I'm still here & still complaining. Likewise, the sis just younger than I, has been sick for even longer. (well we both had med oddities as kids too)

Anyway it was that sister who figured this out. She tried the gluten-free diet and was Healed almost instantly. I thought that was impressive so I started in Nov 2005. I poisened myself last weekend & with in hours the migraine & vomiting were right back- the first since NOV! I have complained of every complaint on the symptom list, (except a couple - & those are suffered by my other sibs.) I think this is the answer we've been looking for.

Never however, until I started reading this site, did I realize how difficult it was going to be.

We'll see if my blood work, post diet (Gluten-free Casein-free soy free) shows anything. The itching oh the itching, it too is diminishing. I think back to how I had gotten to where I never used to want to eat. I was always famished, but I never felt good after eating. I had unknowingly gotten to where I lived on bananas & popcorn.

Going Gluten-free Casein-free it literally feels like a veil lifting. The grey cloud is lifting in my head. The thinking had been that some people take longer than others to recover from cancer. - But know so many symptoms came back the minute I ate that unidentified sauce & had a margarita. oh it was bad. Still suffering the effects. & then I ate beets & forgot I ate beets, so that is always a scare. What are night vegetables by the way - tomatoes & beets? I don't want to poisen myself any more. Now I'm scared of c/c everywhere I don't want to touch anything I don't know how to leave my house. Another friend has just reiterated how bad microwaves are for all food it apparently kills any nutrients in food - gluten-free or not. Good grief this is difficult.

I can't unzip any downloads from delphi & in text or mac or ...

So my question at the moment is - Is there a "print friendly" way to print out the collective knowledge on THIS site? I can't afford ink as it is, I don't want to repeatedly print the ads & the original message.

BTW I posted elsewhere asking for assistance locating a really good c/c list - it was here. - I think under FAQ additional things to beware of.

Thanks from long-winded.

BB22

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Mmmhh ...

Was your skin rash called erythema nodusum?

I am wondering because I have had a similar sounding benign rash all over my body, including twice on my face, where it was quite disfiguring for a month then uncermoniously dissapeared without a trace.

It has also manifested on my legs several times, which was why I was wondering. I am also trying to figure out if I am gluten sensitive, and I wondered if there was some casual connection to this erythema nodusum and celiac disease.

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Mmmhh ...

Was your skin rash called erythema nodusum?

I am wondering because I have had a similar sounding benign rash all over my body, including twice on my face, where it was quite disfiguring for a month then uncermoniously dissapeared without a trace.

It has also manifested on my legs several times, which was why I was wondering. I am also trying to figure out if I am gluten sensitive, and I wondered if there was some casual connection to this erythema nodusum and celiac disease.

I'm pretty sure that it wasn't erythema nodusum, not that I know what that is, but I know that wasn't what the dermatologist told me. I might call this week just to get the old test information. I only had it the one time a couple years ago, and it was never on my face.

The one small rash I get on my legs every now and then is no bigger than a fingernail and fades away after a month or 2. It just strikes me as odd because it looks exactly like the rash I had that one time which spread.

- charlie

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Long before I was ever diagnosed celiac, I had almost daily headaches , which I chocked up to bad sinuses, but read an article about dairy. I decided to stop milk altogether and my headaches decreased by 80-90%. I still eat cheese on occasion, but it made a huge difference when I stopped the milk. And the brain fog only seemed to improve when I went gluten free, which has only been since september, but I definitely feel like I have a clearer head.

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