3 Years On, Still Sick.

[up late]

Ack, now my computer's decided to play up.

I've just read the referral to the rhumatologist, my Dr's put in the neurologist report, it suggests I should be referred to a psychiatrist!!! It's pathetic, I'm suffering and the people who are supposed to be getting to the bottom of it are off speculating about my sanity? I'm sick of drs who write patients off just because they can't find something.

So that's it then, I'll go back to the allergy clinic but no more drs, I've had it with them, it's been such a waste of time and money. Useless tests, useless treatments, insults to my intelligence and questioning of my character, I've endured 20 years of their carry on, I'm so angry right now.

[ravenwoodglass]

Ack, now my computer's decided to play up.

I've just read the referral to the rhumatologist, my Dr's put in the neurologist report, it suggests I should be referred to a psychiatrist!!! It's pathetic, I'm suffering and the people who are supposed to be getting to the bottom of it are off speculating about my sanity? I'm sick of drs who write patients off just because they can't find something.

So that's it then, I'll go back to the allergy clinic but no more drs, I've had it with them, it's been such a waste of time and money. Useless tests, useless treatments, insults to my intelligence and questioning of my character, I've endured 20 years of their carry on, I'm so angry right now.

My Neuro did that also. I even had brain lesions diagnostic of celiac but those were, according to him, 'something lots of folks have and they mean nothing'. I was furious and I don't blame you for feeling the same. I eventually gave up until a really good PT nagged me into seeing an allergist who worked with intolerances as well as allergies. Since celiac is not an allergy most allergists were also useless but the one I found who did deal with intolerances put me on an elimination diet. Hopefully your allergy clinic will be able to help you.

[lucia]

I just wanted to chime in that I was diagnosed with fibromyalgia as well in my mid-twenties. I was told then that I would always suffer from fibromyalgia. But it was under control through diet, exercise, and acupuncture within a few years. I used to sometimes have symptoms if I wasn't getting enough exercise. Since going off of gluten, I haven't had *any* fibromyalgia symptoms (despite a lack of exercise because of other issues). Kind of remarkable.

More recently, my specialist suggested that my tiredness was from fibromyalgia. I think that the first diagnosis was accurate. I responded to pain points, as a fibro patient would. But I don't have fibromyalgia anymore. Bringing it up was just my doctor's way of fishing around for something (!) that could explain why she couldn't find anything wrong. Well, maybe she can't find anything wrong, because it's a new or misunderstood condition? I'd rather live with uncertainty, than to be misdiagnosed.

In any case, I applaud you for your persistence, and I believe it will pay off in the end. An autoimmune condition is multi-factoral, and it seems to take more than one approach to heal the entire system. Unfortunately for us (but fortunately for cancer patients), Western medicine was developed to diagnose and treat a single incident of disease, not the whole body. I believe that TCM is able to address the entire system, which is why it has worked so well for me. I hope you find a combination of treatments that work for you, and you get healthy and strong as soon as possible.

Best,

Lucia

[up late]

You're not going to believe it but I had another flare up just before the weekend. After 3 ER visits, 2 drs rooms, 4 chemist shops, a rhumatologist, 3 medication reviews and much gripeing about the healthcare system (mostly from the drs) I finally landed on a drug combination that's showing some promise (prescription anti inflamatories, something to kill stomach acid so I don't wind up with an ulcer and codeine. I was also assured that a rhumatologist isn't going to palm me off if he can't find anything which had better be true because I'm at the end of my rope here.

I'm really angry about the state of things, I got totally hung out to dry, couldn't get a drs appointment, had to call an ambulance to get to the hospital because the house call guy here just tells you to go to the hospital anyway, I was kept waiting so long when I got there the pain meds wore off then I got yelled at by a nurse for ending up on the floor as a result, I ended up walking out without even seeing anyone. Walking out was the best thing I could have done though because by some twist of fate (or maybe law of averages because of the sheer volume of similar incidents) I got lost looking for rhumatology and ended up in the rooms of the rhumatology professor, his receptionist took one look at me and paged his associate who saw me that afternoon, did a full work up (bloods, urine, x-rays, screening for autoimmunes, infections, arthritis etc) and got me an earlier appointment at the outpatients for the results (I would have had to wait till next year) so as long as the hospital doesn't lose this lot of tests I may actually end up getting somewhere. Trick is now to get through to the next appointment without incident.

[Les Stevens]

Hi, after a life time of on and off illness I figured out I had celiac

6 yr ago. But gluten intolerance was only the tip of the ice berg. I get horrible chronic fatigue and fibro but am very well, fit, and weight appropriate if I do the following:

1. No grains (esp gluten, corn), soy, legumes (esp peanuts, almonds), dairy.

2. Gluten IS IN MOST MEDICINES even IV fluids! I only buy Certified

Gluten Free Meds (eg Country Life Vitamins- cheap on line)

3. One tiny piece of gluten is enough to begin the cascade of illness!

4. Corn and Soy in EVERY FORM is your enemy (eg corn syrup, High

Fructose Corn syrup)(soy lecithing, soy anything)

I have no idea why celiacs are not talking about the fact that we are completely carlbohydrate intolerant. Ron Hoggan has a good introduction to

this concept in his book "Dangerous Grains" but it is only a beginning. Those of us who finally began the Specific Carlbohydrate Diet (especially our children, per "breaking the Vicious Cycle") were shocked at how well we became when we eliminated grains.

My fibro, fatigue,and overweightness comes from carbs and soy. Carbs give many of us sleep apnea (eg dark circles under the eyes and fatigue/brain fog) You know you have sleep apnea when:

1. You sigh during the day or (if you will stop and calmly observe your

breathing) when your breathing is shallow becoming more shallow

until you sigh or gasp a little; and/or

2. You snore and/or stop breathing in your sleep and gasp yourself awake.

The proof is in the putting on this issue. If you know you have sleep apnea it is easy to prove that carbs cause it by eliminating carbs for a couple weeks and seeing how refreshed you are, how your blood pressure comes down, and so forth. Also see www.lowdosenaltrexone.com for help on this issue.

There is a separate (from celiac discovery) revolution going on in the internet community. The Paleo diet people have figured out that carbs kill and put plaque in your veins, while (gasp!)saturated fats (eg ghee-which is butter with no casein, coconut oil, MCT oil, palm oil etc) blow the plaque out of your veins so long as you are not doing other carbs.

The proof is in the putting: go to www.animalpharmblogspot.com and see these fantastically young, brilliant doctors, and other scientists, who run marathons, figure out how to have the perfect body to win the races, and serendipidously model the healthiest way to eat and recover from just about everything. The recovery mecanisms are based on science, and these scientists use the "Track Your Plaque" heart scans to prove what foods are really heathful, and which are absolutely not,along with other blood tests.

All over the country an exercise/food group is popping up using the above and below principals to regain health: The groups are called "Crossfit______"

(the name of your town, eg "Crossfit Asheville"), so that you do not need to do this alone.

If I get glutened, and/or contaminated with anything soy or almonds I have

a huge pain event (meaning fibromyalgia). I get in bed, fast for 4 days with pineapple juice and take triple doses of MUCINEX (go to the "guiafenisen protocol" online which can only work if the person with fibro is not eatinggluten & dairy, as well as any other foods they are alergic to) and then

jump out of bed 4 days later refreshed with no pain.

To recap: We celiacs are totally carbohydrate intolerant. We get severe

hypoglycemia when we eat carbs (supposidly hypoglycemia without diabetes is rare, this is not correct) To prove this to your self do carbs one week (watch

your self gain lots of weight, brain fog, pain etc) then eat protein (esp grass fed beef) and saturated fats the next week (watch your self loose lots of weight, become refreshed, no pain). Many of our hypoglycemic events happen at night thus

the fatigue when we wake up. If we are hypoglycemic our brain doesn't have

oxygen (per no glucose in the brain), thus the brain fog.

I have no idea why we are not addressing the total carlbohydrate/hypoglycemia issue in the celiac community.

My 12 year old failed to thrive until 2 years ago when we went low-low carb.

She no longer has ADD (and it was severe per the unstable blood sugar of hypoglycemia) and has grown 3.5 inches a year instead of 1.5. Her moods are

increasingly more stable, her happiness factor increased dramatically. Gluten

contamination from unexpected places is a set back for both of us but recovery

is quicker if we have been low-low carb and no dairy, soy, almonds, (no eggs for my daughter).

The low-low carb diet in tandum with gluten/diary elimination is THE foundation for the anti-inflamatory diet, anti-cancer diet, anti-seizure diet, anti-bipolar/schizophrenia diet, AUTISM DIET, and many others, it is all related.

We all have a chance at a better life with out meds, surgery, and esoteric/expensive protocols! Here is wishing you all the best.

[Melissa85]

Sounds like you could have chronic Lyme disease. It's hard to say for sure, but many people do not consider this diagnosis, all the while becoming more and more sick. It's become increasingly common, although is difficult to diagnose after the initial period of infection due to the spirochete bacteria hiding in the tissues of the body. They are actually spiral shaped, much like syphilis bacteria. I'm no expert, but my brother recently found out this was what he has been sick with the past five years. He has experienced neurological problems, tinitis, vertigo, muscle pains, tingling, and so forth. The first test is always negative if not given right away. However, further testing showed positive for Lyme.. as well as some other bacteria I cannot remember.

If you do have Lyme, the only treatment is long term antibiotics. Probably 6 months to a year. It's best to seriously consider this and do your research, get at least one of the two more reliable tests (not the one they give people who can actually see a bulls-eye, and have just been bitten). I'm sorry I cannot tell you exactly what those tests are just now..

Chronic Lyme seems to be controversial for some reason in the medical community and have become highly politicized. There was a documentary done on this in 2009 called "Under Our Skin". The trailer is on

Split into 4 parts

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

It's a scary documentary because several of these people have been sick for so long. Thankfully, many are seen through to a complete recovery. It's amazing to see someone with facial paralysis who limps and is clearly in constant pain recover to the point that they can go about their life again normally.

.... I've had to quit work and I'm down to only 2-3 productive hours a day, I cannot push through it anymore without collapsing in pain that leaves me completely burnt out and barely able to move.

I now also have more chronic pain, joint pain, bone pain, muscle pain, I'm in the process of trying different pain meds. ..I've recently had MS like symptoms (numbness, tingling, vertigo and I was unable to walk properly for 2 weeks) It's left me with leg muscle weakness, clumsiness and dragging one of my feet.

......only thing current that's shown up is a slightly high free testosterone (my estrogen/progesterone are ok) and ketones which the dr says is likely after a virus. Visually my colour and skin temp are a bit like something from day of the living dead, dark circles, grey pallor, hair and skin are flakey dry, limping, I don't look well. I also have the coeliac genotype which I don't know a lot about or if it's relevant for something else. Other than that apparently I'm healthy :/

Has anyone had something similar or know what might be going on? It feels like everything is shutting down, it's picking up speed and I don't know why. I haven't been able to get a diagnosis much less treatment and I'm running out of options.

[psawyer]

2. Gluten IS IN MOST MEDICINES even IV fluids!

Provide your source for this, please. It is in conflict with generally accepted knowledge here.

[ravenwoodglass]

Provide your source for this, please. It is in conflict with generally accepted knowledge here.

Yes please do. From what I understand although some oral meds may have gluten binders I have never heard of it being in an IV. Perhaps in nutrition that is coming from a tube into your digestive system but not in an IV.

[Loey]

Up late: Your post could have been written by me!! Although, I went undiagnosed for nearly 50 years so I had tremendous damage to my entire body (I was at the emergency room in a total body muscle spasm gripping my right side from the horrible pain when a surgeon suggested a gastro for me to see) when I was finally diagnosed. I've had shingles twice since diagnosis, and I continue to suffer with tingling/numbness in the hands/feet and I get terrible muscle spasms still - very painful - also have really bad tendonitis and muscle weakness. Sometimes I can barely make it up the stairs, sometimes I walk up no prob. Makes no sense to me. Blood tests are normal - but then they were normal when I was in the middle of a thyroid storm, too, so I don't think relying on blood work for me works real well. But, I can't get any docs to believe that my blood doesn't show much. I mean, even all the vitamin blood results showed me in the "normal" ranges when I was so severely sick from the Celiac. I wish I knew what was going on, because I've now been labeled with Fibromyalgia (I don't have the necessary tender points) and "chronic pain syndrome" and I can't even get a doctor to see me in the new city we just moved to because of it. I'm better than before I went off gluten, but I am not "well". I hope you find some answers, because I can't even get in to see a doc, now.

Hi Kitty,

I am new to this forum and to Celiac. I also relocated to a new state. I was diagnosed a week or two before I moved after being bedridden (due to Celiac symptoms) for 6 weeks prior to the move. I think I like my new GI but know better than to expect him to have all the answers. I'm in the middle of a really bad three week flare right now and thought I was staying gluten-free. This forum has taught me how many ways you can be glutenized.

Thank you all for helping me to feel less alone.

Loey

[up late]

I'm already booked into the allergy clinic for review next month but I'm pretty sure it's not gluten, if anything I'd be looking at amines which I had a mild reaction to, I'm ok to eat it but it might be causing me some problems if I'm eating too much of it. Things like the fruits, salads, veg and Asian style foods I substituted for the cake/deserts, bread on the side, hamburgers and pizza I had before going gluten-free could have pushed my amine level up enough for me to reacting to it. It doesn't explain where I'm at now but could account for the tiredness and general feeling of unwellness I had a little while after going gluten-free before the attacks/flares started. This is all I've found about it online so far Open Original Shared Link but I'm looking into it further. I'd be interested to find anything on alcohol intolerance, SSRIs and bad reactions in people with amine intolerance too since I've had some pretty unpleasant experiences with them.

Medicines are very strictly labeled here (Australia), OTC it's written on the packet or insert, prescription it's on the insert/PDF consumer information printout (on the net/chemist computer, anyone anywhere can download it, you'll find it on the last page in the ingredients list). I've taken a lot of different medicines this year and not one of them has not had "does not contain ... gluten ..." on it, just about all of them however have contained lactose (if anyone is sensitive)

[ravenwoodglass]

I'd be interested to find anything on alcohol intolerance, SSRIs and bad reactions in people with amine intolerance too since I've had some pretty unpleasant experiences with them.

You mention alcohol intolerance, are you drinking distilled gluten grain derived alcohols? Although many of us are fine with them there are celiacs who do react. If you do consume them you may want to stop for a bit and see if that helps. As far as SSRI's are concerned there are folks who just don't tolerate them. I am one of those. They make me worse not better. I found a research article that mentioned that people who don't react well to SSRI's should be checked for celiac. If I can find the link to the article I will post it later.

[up late]

I didn't leave alcohol out of the equation. I usually try cider, wine or champagne and don't often get to the 2nd drink before I feel like I have a blinding post bender type hangover that lasts several days, I tried top shelf scotch once and got the same reaction. Needless to say it's not something I've done often.

[CarlaB]

I didn't leave alcohol out of the equation. I usually try cider, wine or champagne and don't often get to the 2nd drink before I feel like I have a blinding post bender type hangover that lasts several days, I tried top shelf scotch once and got the same reaction. Needless to say it's not something I've done often.

That is a MAJOR Lyme symptom!!

[kittyluvr]

Hi Kitty,

I am new to this forum and to Celiac. I also relocated to a new state. I was diagnosed a week or two before I moved after being bedridden (due to Celiac symptoms) for 6 weeks prior to the move. I think I like my new GI but know better than to expect him to have all the answers. I'm in the middle of a really bad three week flare right now and thought I was staying gluten-free. This forum has taught me how many ways you can be glutenized.

Thank you all for helping me to feel less alone.

Loey

Hi there, Loey

I'm not quite sure how long since your diagnosis. I initially got better within about 9 months, and I no longer had the antibodies in my blood workups. I was very sick when I finally got a diagnosis at 48 years old. I actually had some alzheimer type symptoms, and could not find my way home from the grocery store 2 blocks from my house. But, then, I couldn't walk without assistance, so I wouldn't go to a store alone I did start feeling somewhat normal about 2 years after diagnosis, but then I just started getting the pain in the joints, the tendons, muscles cramping, and I now go through flares that are very much like some MS symptoms. I don't have the tender points of fibro - my entire body is tender to touch!! Anyway, just wanted you to know it can take some time for the intestines to completely heal and so you may not get to feeling great for awhile. It all depends on the damage done and what else you may have going on in your body. Most people who have one autoimmune disease are susceptible to developing others, so we can have the Celiac under control, but another could still be there. Getting a doctor to figure out what that is ... now, that's the hard part! I just saw my new doc yesterday, and she thinks I may not have healed completely and my intestines aren't able to absorb nutrients properly. B-12 and D are the biggest suspects because my numbers were in the low normal. Since I take supplements, she is thinking I need to get injections of B-12. More blood work was done, and now I wait another month to find out the results before trying anything new. After 10 years of fighting with doctors, I'm a little tired of it all.

[Loey]

Thanks for the post here. I'm really frustrated right now because I just called my GI to check about my test (capsule endoscopy) on Monday (I have to prep for it Sunday night) and BC/BS hasn't approved it yet and he's not sure they will. I'm ready to cry. My old GI and GP got the tests I needed authorized immediately before I moved.

Thanks for listening.

Loey

[Loey]

Hi there, Loey

I'm not quite sure how long since your diagnosis. I initially got better within about 9 months, and I no longer had the antibodies in my blood workups. I was very sick when I finally got a diagnosis at 48 years old. I actually had some alzheimer type symptoms, and could not find my way home from the grocery store 2 blocks from my house. But, then, I couldn't walk without assistance, so I wouldn't go to a store alone I did start feeling somewhat normal about 2 years after diagnosis, but then I just started getting the pain in the joints, the tendons, muscles cramping, and I now go through flares that are very much like some MS symptoms. I don't have the tender points of fibro - my entire body is tender to touch!! Anyway, just wanted you to know it can take some time for the intestines to completely heal and so you may not get to feeling great for awhile. It all depends on the damage done and what else you may have going on in your body. Most people who have one autoimmune disease are susceptible to developing others, so we can have the Celiac under control, but another could still be there. Getting a doctor to figure out what that is ... now, that's the hard part! I just saw my new doc yesterday, and she thinks I may not have healed completely and my intestines aren't able to absorb nutrients properly. B-12 and D are the biggest suspects because my numbers were in the low normal. Since I take supplements, she is thinking I need to get injections of B-12. More blood work was done, and now I wait another month to find out the results before trying anything new. After 10 years of fighting with doctors, I'm a little tired of it all.

Hello again. I'm thinking I need a second opinion because no blood work has been done (to my knowledge) to see what vitamin deficiencies I might have. I haven't found a GP here yet. Just went to the GI to get the ball rolling for me and to have my son genetically tested before he left for college. I am beginning to feel that when I call the office I'm seen as a complainer. I fought with doctors about other medical problems over the years but now those problems all seem to be autoimmune (and related to Celiac?) and I want to get answers. I'm a firm believer in taking responsibility for my health and not expecting a doctor to have all of the answers but I know that I felt better when I first began the diet (June) and something is going on now. I hope that sticking to the elimination diet (perhaps without carbs) will help.

Loey

P.S. I'm not sure how long I went undiagnosed but have had medical issues most of my life and my old GI thinks Celiac's been the cause for a long time.

[Loey]

How strict are you with the diet? If you are still having DH flares that would mean you are getting CC'd somewhere. It also sounds like you may be ataxic which would also likely make you very sensitive to CC. Could you possibly be getting glutened from CC in either your processed food, your pet's food, cooking gluten for others or your toiletries like shampoos, lotions etc?

Are you on any meds or supplements and if you on any either OTC or script have you checked with the maker to make sure they are safe. Supplements can say gluten free but still have barley and wheat grass so be sure to read the whole label.

Are you consuming any distilled gluten grains like in alcohol or vinegars? Many are okay with them but some will react.

What type of work were you doing? We can't work around airborne flour and stuff like drywall compound and wall paper pastes can be an issue.

Have you tried eliminating soy and dairy again? Just because they were safe for you 3 years ago doesn't mean they still are. My soy intolerance didn't show up until I had been gluten-free a couple of years.

I hope you can figure stuff out and are feeling better soon.

What is DH?

Loey

[sa1937]

What is DH?

Loey

DH = Dermatitis Herpetiformis

- or -

DH = Dear Husband

[up late]

Hi Loey,

You're in good company, seems a lot of people on the board have had similar problems. I don't know how routine blood tests are after a coeliac diagnosis, I had to ask to have my vitamin levels checked becuase of vitamin deficiency symptoms, I also requested a bone density scan because I was getting bone pain, not to alarm you but I have osteoperosis from 18 years of undiagnosed coeliac malabsorbtion (I was one of the ones who had signifigant wasting though).

DH is a blistering, increadably itchy skin rash some people with coeliac get, it settles down after going gluten free.

I've been unwell since I was young too, allergies, ear infections, bad stomach problems, anxiety, tired all the time, a lot of it settled down after going gluten free. First month on the gluten-free diet I hadn't felt so good since I was a teen. The old symptoms haven't come back what I have now is different. It does take a long time to sort out but I hope you get a diagnosis and everything clears up for you.

[Loey]

DH = Dermatitis Herpetiformis

- or -

DH = Dear Husband

You always make me smile with the way you inject knowledge with humor. Luckily DH stands for Dear usband for me. He's being extremely patient and supportive. I do suffer from the cold and numb hands and feet (with tingling) and usually crawl back into bed to watch a little TV and get warmer in the morning. This forum has gotten me out of bed much more and that's a Godsend.

I mentioned on another thread that I'm going to try a new doctor (one referred to us by my husband's co-worker). He has been seeing them for years (he has IBS) and is very happy the way he's been treated. It's further away but I think it's important for me to have a good relationship with my GI. I just don't think my new one is taking this seriously and think he might be labeling me as someone looking for pain killers. I haven't taken (or wanted to take) any since I got sick because I don't want to mask the pain or create other problems. They all don't have experience with this disease. I also know I have to be my own detective and advocate. I'm hoping the other doctor will push for the capsule endoscopy the way my old GI pushed for all of the other tests I had before I moved. After going undiagnosed for God knows how many years I want to know how damaged the villi are and if any organs were damaged.

Loey

[sa1937]

You always make me smile with the way you inject knowledge with humor. Luckily DH stands for Dear usband for me. He's being extremely patient and supportive. I do suffer from the cold and numb hands and feet (with tingling) and usually crawl back into bed to watch a little TV and get warmer in the morning. This forum has gotten me out of bed much more and that's a Godsend.

I mentioned on another thread that I'm going to try a new doctor (one referred to us by my husband's co-worker). He has been seeing them for years (he has IBS) and is very happy the way he's been treated. It's further away but I think it's important for me to have a good relationship with my GI. I just don't think my new one is taking this seriously and think he might be labeling me as someone looking for pain killers. I haven't taken (or wanted to take) any since I got sick because I don't want to mask the pain or create other problems. They all don't have experience with this disease. I also know I have to be my own detective and advocate. I'm hoping the other doctor will push for the capsule endoscopy the way my old GI pushed for all of the other tests I had before I moved. After going undiagnosed for God knows how many years I want to know how damaged the villi are and if any organs were damaged.

Loey

Well, DH or DH...I guess they could both flare. I'm glad your hubby is so supportive. And I think we can all use as much humor as we can get! I just don't take life too seriously any more...have had enough of that just dealing with feeling crappy (thankfully, I've improved tremendously and hope you will, too). It's good the forum gets you out of bed...never mind that I'm still in my robe. lol But then I'm retired and it's chilly and rainy here today so I guess that's about as good an excuse as I can think of right now. It's the kind of day to get out the crockpot and make soup.

Sometimes it's necessary to find a different dr. and good to have a referral from someone who's gone there. Difficult to move to a new area and not know where to go. My GI dr. is always so rushed...a 10-min appt. and I'm out the door it seems. Whereas my PCP is patient and spends so much more time with me. Of course, it helps that his daughter also has celiac so he's not clueless and didn't hesitate to order the celiac panel. He even knew exactly what to test for!

You might also be surprised to find the elimination diet helps so much to be able to pinpoint what's really bothering you. Some doctors are too quick to get out the prescription pad. Hope you feel better soon!

[Loey]

Well, DH or DH...I guess they could both flare. I'm glad your hubby is so supportive. And I think we can all use as much humor as we can get! I just don't take life too seriously any more...have had enough of that just dealing with feeling crappy (thankfully, I've improved tremendously and hope you will, too). It's good the forum gets you out of bed...never mind that I'm still in my robe. lol But then I'm retired and it's chilly and rainy here today so I guess that's about as good an excuse as I can think of right now. It's the kind of day to get out the crockpot and make soup.

Sometimes it's necessary to find a different dr. and good to have a referral from someone who's gone there. Difficult to move to a new area and not know where to go. My GI dr. is always so rushed...a 10-min appt. and I'm out the door it seems. Whereas my PCP is patient and spends so much more time with me. Of course, it helps that his daughter also has celiac so he's not clueless and didn't hesitate to order the celiac panel. He even knew exactly what to test for!

You might also be surprised to find the elimination diet helps so much to be able to pinpoint what's really bothering you. Some doctors are too quick to get out the prescription pad. Hope you feel better soon!

Thanks for the new reply. I'm still in my robe as well. I also sometimes have to put my hands under hot water. I'm not retired yet - just unemployed. I don't want to go on disability (can you even do that if you're unemployed?) Our son just started college and I spent 6 years in grad school to become an elementary and special education teacher (went back to school at 50). I wasn't sick (or showing symptoms) then or I couldn't have done it. It was grueling but exhilarating at the same time. I taught during the day and took classes at night. In the summer I doubled the classes. Now I haven't even submitted the paperwork to become a sub. My goal was the spring but I have to feel a lot better before I can do it. I'm going to feel positive about the elimination diet. Just trying to research what food to add in next.

You are such a blessing!

Loey

[sa1937]

Thanks for the new reply. I'm still in my robe as well. I also sometimes have to put my hands under hot water. I'm not retired yet - just unemployed. I don't want to go on disability (can you even do that if you're unemployed?) Our son just started college and I spent 6 years in grad school to become an elementary and special education teacher (went back to school at 50). I wasn't sick (or showing symptoms) then or I couldn't have done it. It was grueling but exhilarating at the same time. I taught during the day and took classes at night. In the summer I doubled the classes. Now I haven't even submitted the paperwork to become a sub. My goal was the spring but I have to feel a lot better before I can do it. I'm going to feel positive about the elimination diet. Just trying to research what food to add in next.

You are such a blessing!

Loey

My 44-year old daughter was just diagnosed the end of Aug. Her response, "Thanks a lot, Mom." She's also in grad school (class of 2012). Thankfully she was eating pretty gluten-light for several years and never did have the severe digestive systems we've had. But she is hypo-thyroid and is also anemic. I was shocked that she ended up positive on her celiac panel (the newer DGP test) so she skipped the endcoscopy and went directly gluten free. But school is grueling with a hubby, 13-year old daughter, a house and two dogs. I think you need to just take this time to get well...your body will thank you down the road when you do feel ready to get back into teaching.

You are far too kind.

[Loey]

My 44-year old daughter was just diagnosed the end of Aug. Her response, "Thanks a lot, Mom." She's also in grad school (class of 2012). Thankfully she was eating pretty gluten-light for several years and never did have the severe digestive systems we've had. But she is hypo-thyroid and is also anemic. I was shocked that she ended up positive on her celiac panel (the newer DGP test) so she skipped the endcoscopy and went directly gluten free. But school is grueling with a hubby, 13-year old daughter, a house and two dogs. I think you need to just take this time to get well...your body will thank you down the road when you do feel ready to get back into teaching.

You are far too kind.

No, I'm not too kind!!! You have been amazing. I'm sorry about your daughter's diagnosis. Glad she's not having serious symptoms. My son had the genetic blood test in June (hopefully it was the right one - it took weeks to get the results) and the results showed he didn't have the gene or disease (one less thing for him to blame me for - 18 year old boys can be brutal) so I hope the blood test was enough. My husband is extremely healthy and rarely gets sick. My son had allergies (some foods but not many) while growing up but he's grown out of many of them. He's heavily involved in Martial Arts (since he was 6 but more seriously since high school) and this has seemed to give him discipline and strength. He put up with the gluten-free food over the summer (not much of a choice) but is on a regular meal plan at college.

I can't wait to see him tomorrow. He's bringing a female friend with him to the concert. First time we're seeing him since August. Thanks to your advice and the elimination diet I think I'll be able to handle the concert (we'll be gone at least 7 hours). We're into Pink Floyd and are seeing one of the members of the band perform The Wall. We saw Paul McCartney over the summer. He was amazing and played for 3 hours straight without taking a break. I was able to stand through the entire concert. I had been gluten free for about a month and a half then (mid August). I made the mistake of eating something they said was gluten free at the venue and paid for it dearly the day after. It was the 5 hour car ride from ... We couldn't even get off the highway for a rest stop. I was better for that trip. I might not eat on Friday just to make sure I don't need a bathroom run.

My crock-pot chicken soup is calling for my normal chicken soup ingredients (but I'm being good- only water, salt, pepper, and chicken). Just ate some rice and will see how it sits with me. If I can handle it I'll add some to the crock-pot later.

I'm going to try to get myself out of the house to return the sweats I bought yesterday that are dangerously baggy (I'm 5 foot and I bought them in large ) - they trip me when I go up and down my stairs (another area I find difficult since the illness- it exhausts me and can be painful). First I'm going to take a very long and very hot shower and make sure that the rice sits well.

Loey

[sa1937]

No, I'm not too kind!!! You have been amazing. I'm sorry about your daughter's diagnosis. Glad she's not having serious symptoms. My son had the genetic blood test in June (hopefully it was the right one - it took weeks to get the results) and the results showed he didn't have the gene or disease (one less thing for him to blame me for - 18 year old boys can be brutal) so I hope the blood test was enough. My husband is extremely healthy and rarely gets sick. My son had allergies (some foods but not many) while growing up but he's grown out of many of them. He's heavily involved in Martial Arts (since he was 6 but more seriously since high school) and this has seemed to give him discipline and strength. He put up with the gluten-free food over the summer (not much of a choice) but is on a regular meal plan at college.

I can't wait to see him tomorrow. He's bringing a female friend with him to the concert. First time we're seeing him since August. Thanks to your advice and the elimination diet I think I'll be able to handle the concert (we'll be gone at least 7 hours). We're into Pink Floyd and are seeing one of the members of the band perform The Wall. We saw Paul McCartney over the summer. He was amazing and played for 3 hours straight without taking a break. I was able to stand through the entire concert. I had been gluten free for about a month and a half then (mid August). I made the mistake of eating something they said was gluten free at the venue and paid for it dearly the day after. It was the 5 hour car ride from ... We couldn't even get off the highway for a rest stop. I was better for that trip. I might not eat on Friday just to make sure I don't need a bathroom run.

My crock-pot chicken soup is calling for my normal chicken soup ingredients (but I'm being good- only water, salt, pepper, and chicken). Just ate some rice and will see how it sits with me. If I can handle it I'll add some to the crock-pot later.

I'm going to try to get myself out of the house to return the sweats I bought yesterday that are dangerously baggy (I'm 5 foot and I bought them in large ) - they trip me when I go up and down my stairs (another area I find difficult since the illness- it exhausts me and can be painful). First I'm going to take a very long and very hot shower and make sure that the rice sits well.

Loey

While I certainly wouldn't want to wish celiac on anyone, I am glad my daughter was diagnosed so she would take it seriously. I fully expected the results to be false negative since she didn't binge on gluten like did. Her endo reluctantly ordered the celiac panel although he told her a couple of years ago that he doubted she had it as "it is very rare". Yeah, right. He had her thyroid totally under control but she is anemic in spite of being on iron pills for years. So her next follow-up might require some adjustments in meds.

If your son only had a gene test, I know that's not diagnostic and from what I've read here, there are possibly a lot of genes that come into play in celiac. At some time you might want to get the actual celiac panel done on him.

Your chicken soup may be a little bland without the normal ingredients you use, but if you can handle it without any problems, it'll be so worth it. Do you have a thermos? If so, you might want to take some with you on Fri. so you don't starve yourself.

If you can't find sweats that fit right (maybe petites), have you ever thought of looking for leggings that you could wear under a baggy sweatshirt? They usually aren't real tight at the waist.