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  1. Do you sometimes feel your body is intolerant to everything?  Six weeks ago I developed an itchy blistery rash at the corner of my mouth.  After three weeks of trying to manage myself I ended up at my GP's office.  She thought I had a bacterial infection that had set up due to what was probably originally a dermatitis allergy type rash and prescribed a topical antibiotic: mupirocin.  After 4 days using the topical antibiotic the rash was worsening with new itchy blisters.  I was prescribed doxycycline antiboitic 100 mg 2 X a day for a week.  After a week I had no improvement so went to see a dermatologist.  The derm renewed the doxycline prescription and gave advised to use vytone cream (an anti-fungal/bacterial/steroid mix).  The cream actually made the rash blister worse. A second trip to the derm and I was prescribed minocycline antibiotic, 100 mg 2 X a day and switched to topial cream Elidel.  I began the minocycline prescription last Thursday night.  Friday I was experiencing dizziness and felt like I was in a fog.  Saturday my arms and legs were achy and I felt really weird - spaced out, strange electrical sensations throughout my body.  Stupidly I persevered with the antibiotic because it seemed to be helping the rash.  The derm had prescribed a 30 day course of treatment.  I assumed my body would begin to adjust to the drug.  I took my last pill on Sunday morning and within a couple of hours I thought I was going crazy.  My leg muscles seemed weak, my right arm was cramping and I had spasms in my fingers, I thought I was going to pass out more than once, and I had on and off buzzing in my ears.  My husband and I were out of town for the weekend in a rural location so we packed up and drove two hours back to our home.  After 11 hours of taking that last pill I was still having a lot of difficulty and my husband was concerned about a stroke because of the muscle problems I was experiencing so we went to the ER.  They ran a full blood work up and a CT scan of my head and all came back normal except my blood platelet count was low.  Their diagnosis was a bad reaction to the antibiotic.  They gave me IV fluids and sent me home with instructions to drink lots of water.  When I went to bed that night there were loud crunching noises in my ears.  It was really frightening.  Monday morning I followed up with my GP who advised minocycline is a strong antibiotic and it can be harmful to people who are sensitive to medications (I already have a sulfa allergy and have to avoid antibiotics containing sulfonamides).  The ringing in my ears and the crunching noises were related to the inner ear and a common effect of this type of antibiotic she said.  It's been three days since I stopped taking minocycline and I'm still struggling.  I am still dizzy and my muscles feel week.  I have on and off shivers.  It feels like I have the flu.  These flu like symptoms are a significant improvement over how I felt two days ago so I'm hoping that with time the dizziness, muscle weakness, extreme fatigue etc. will diminish.  I'm posting this experience because I know rashes and dermatitis are common for those of us with gluten and wheat problems and I want people to know to use prescribed antibiotic drugs to treat rashes with caution.  My Dr. told me I should never have continued to take the minocycline after I had the first dizziness and fogginess sensations.  My GP promised I will get better, it's just going to take some time to get the drug out of my body and I'm hoping she's right.  I've been off work the last three days but need to return tomorrow and am dreading trying to drive etc. when I feel like I'm on a see-sawing boat.  My co-workers who pop pills with abandon I'm sure think I'm a wimp.  I am thankful that I have a couple of friends who can relate to what sometimes feels like being sensitive to just about everything.  The dermatologist suspected it was a new toothpaste I had just switched to which started the rash which led to this whole mess.  Would love to hear from anyone else who's had similar experiences with antibiotics.

  2. I think it's also called a familial tremor.  My grandmother had it and my aunt has it.  Neither as far as I know are celiac.  My grandmother's tremor was in her hands and worsened with age.  We gently would make fun of her when she would hand us a cup of tea because the majority of the tea ended up in the saucer instead of the teacup!  My aunt's tremor began to show up about 10 years ago (she's in her early 60s).  My mother is celiac and lactose intolerant and does not have the tremor - she's in her 70s.  I am celiac and people started noticing  my hands shake about 5 years ago.  Like someone else mentioned it seems to be more obvious when I'm eating - holding a knife and fork.  I wasn't even aware of it until others would comment and ask if I was feeling OK.  I'm in my late 40's so I'm expecting to be pretty entertaining in my 60's!!  I haven't heard of any links between celiac and tremors.  The medical community doesn't seem to consider an essential tremor any cause for concern.

  3. NoWheatGirl 27, I'm sorry you're having so much difficulty.  I have found that sometimes the food you think is your problem is not actually causing the symptoms.  This was the case for me 10 years ago before learning gluten was a problem and two years ago before learning meat proteins are now an issue as well.  Both times when I was sick I couldn't eat vegetables, especially cruciferous veg.  For me the gluten and then the meats were inflaming my system so much that I just couldn't digest a broad range of other foods.  Once I figured out the root cause, I was OK eating vegetables again.  Both instances in the past it took a long time (months) for my body to recover.  It's been three weeks since I stupidly ate ham after two years of no meat and made myself sick again.  Today I am still struggling (chest pain, back pain, bile in my throat which is just horrible, my throat feels like its swollen).   Interestingly enough Dairy, including cheese seems to now be a problem which hasn't been before.  My mother is celiac and also lactose intolerant and I hadn't linked the two since I haven't had issues in the past so thank you for the lactose info. Over the past 10 years I've learned not to give up hope of getting to a better place.  It isn't easy but my best advice is listen to your body.  I haven't had good experiences with doctors in the past because they have been quick to prescribe a pill rather than figuring out the why.  Sometimes I think we are the better judge of figuring out the why and the fact you've already identified that gluten is a problem is big step to helping your body recover.  Hang in there, Joanna

  4. I have been having digestive issues for years.  My family has always been convinced I was suffering from Celiac's, but I never bothered to get it checked out.  Recently, either 20 minutes to 3 hours after eating I would get severe lower abdominal cramping and then have awful loose bowel movements.  I finally broke down and when to the GI specialist.  He had me get a blood test for Celiac's and did a biopsy for it.  However, during the endoscopy, despite having fasted since 6pm the day before, he found food in my stomach.  He told me I was suffering from Gastroparesis.  Some of my symptoms were consistent with the diagnosis of gastroparesis, but the lower abdominal cramping, the loose stool, the headaches, the lethargy were not consistant.  I do not have the results back from the Celiac biopsy or the the blood panel.  Anyone else have this issue? Any ideas what I should do, or what I should pursue with my doctor?

    Stacy, I was diagnosed with gastroparesis in 2009.  My main complaints at the time were frequent vomiting after eating and a lot of stomach acid that no acid refulx meds could cure.  I did a stomach emptying test that showed slow emptying and was prescribed reglan.  After reading up on reglan I was too frightened to take it and ended up in the alternative medicine arena.  I've been gluten free for over 11 years now.  Never been tested for celiac but if I eat gluten I have abdominal cramping and diarrhea and blisters that break out behind one of my knees.  Avoiding gluten cured all of that and the sudden onset in 2009 of vomiting and acid was a huge emotional upset for me since I thought I'd figured out how to eat and be healthy and feel good.  I went to the ER several times over six weeks and had every test imaginable (gallbladder, endoscopy etc.) and all looked fine other than stomach inflammation on the endoscopy results.  A natural medicine practitioner was convinced I was dealing with a gallbladder issue that couldn't handle certain fats/proteins and told me she was certain I was blood type A and needed to try vegetarianism.  Turned out she was right.  I've lived on a diet avoiding high fat foods in addition to no gluten and no meat and been perfectly fine since 2009.  Fish, eggs, cheese and yoghurt seem to be OK although I have to go easy on the cheese and yoghurt amounts.  I am actually in the middle of a relapse right now due to overconsumption on many fronts including chocolates and wine over the Holidays, although the final straw seems to have been a small helping of ham I decided to try a week and half ago.  I spent the night with the toilet after eating the ham.  Apparently I needed a reminder that meat is not my friend.  What I've learned over the years is that there can be many causes of food digestion problems, and sometimes changing your diet is all that is needed.  This doesn't work for everyone, but if you can feel better avoiding certain foods then it's totally worth it.  There's lots of resources for how to start a food intolerance elimination diet - that's what I did 11 years ago for the gluten.  Intolerance or allergy to gluten seems to often go hand in hand with intolerances or allergies to other foods.  Good luck to you, Joanna

  5. An update to my post regarding Gastroparesis from 2009.  After being diagnosed with Gastroparesis I was  unwilling to take the GI Dr prescribed reglan to treat due to the very scary potential side affects and learning this medication is often used as a last resort type of treatment.  I went to a natural medicine practitioner who has an extensive chemistry training background.  The natural med practitioner suspected my problems were due to food intolerance and inability to digest certain foods causing a complete imbalance and severe gallbladder like symptoms (vomiting, acid reflux, chest/back pain).  She was sure I was blood type A and should try vegetarianism and avoid high fat foods.  I had a blood test and I am type A and I did switch to a vegetarian diet.  It was a slow recovery but gradually I got better over six months.  I became a pescetarian (I eat fish and veg and non gluten grains and no meat).  Since 2010 I've felt really good most of the time.  There's been an occasional set back if I've eaten something greasy (french fries) but this diet plan has worked for me and I take no prescriptions.  I'm updating because over the Holidays I fell off the wagon and I am now paying the price.  I've eaten a lot of sweets/chocolates, over consumed wine, and the final straw was the very tiny portion of ham I thought I'd try.  The night I ate the ham I threw up and I've been struggling to feel better since - that was a week and half ago.  Ham night was a valuable lesson that I cannot cheat.  Meat seems to be totally off limits to me now.  Interestingly I can eat eggs and cheese, although I have to watch the amount of cheese.  I wanted to update in case this dietary info helps someone else out there with a diagnosis of gastroparesis.

  6. I was so relieved to find these postings on this website. I've been gluten free for over 6 years. I was managing very well without gluten. The last six weeks have been a gastrointestinal hell. I've had multiple dr. visits, tests, 2 ER visits where I was doped up with morpheine and sent home again, and now a possible diagnosis of gastroparesis. 6 weeks ago I began having severe nausea, burping and awful back pain in my upper back. Gallbladder was ruled out with an ultrasound, then a hida scan, and then an abdominal CT scan. The ER thought it was a heart attack both visits and ran chest CTs etc. and all was good there. The second ER visit was while I was waiting for an endoscopy and once they got me into the surgical room the Dr. was too concerned with my pain level to put me under and had me gurneyed over to the ER. The pain was so bad that while I was at the ER I just wished for it all to be over. Pancreas, Liver and all the usual suspects were all ruled out as causes. I finally had the endoscopy which found nothing other than some inflammation in the lower digestive tract but no obvious cause such as bacteria etc. I've missed 6 weeks of work but am so fortunate in that my employer is letting me handle things from home. We've had to really push the doctors to get help. Initally I was loaded up with antacid medications which did absolutely nothing. I had a gastric emptying study last week. The tech told me that if all went well in the first part I would not have to stay for the second part. After the first part she told me she had to keep me and that it looked slow, so I don't actually know a percentage yet. She was encouraging me to walk the halls of the hospital while I waited. I've been reading up on gastroparesis and for the past three days have gone to an all liquid diet. This has helped tremendously with the symptoms. I lost ten lbs in a week and half before the diet switch so it's good to get some food even if it is liquid. Looking back, we (my husband and I) think this has been coming for a while. I've never tolerated the cruciferous veggie group (brussel sprouts, cauliflour, cabbage etc.) and have awful problems with beans and dried fruit. These all appear to be problems for gastroparesis sufferers as they are too tough for the stomach to break down. I've had a few days of real low feelings as it seems unfair to be saddled with celiac and gastroparesis, but am getting my head back on straight and if liquids and soups are my future then so be it. I am posting all this information thinking that it may provide some others help with their symptoms. My intense back pain threw a lot of the doctors, but it is definitely going hand in hand with my gastro disturbances but seems an uncommon symptom from what I've read on the net. I'm 43 years old. In my 20s I had multiple abdominal surgeries due to extensive endometriosis, and had an appendectomy, severing of nerves incuding a prescacreal neurecotmy because of the extent of the disease. I do wonder if the vagus nerve was damaged at some point during the surgeries as this is the nerve that controls the muscles to drive the food to where it needs to be! Or maybe there is a link between celiac and gastroparesis?

    Bottom line thank you for this string of posts. It's always good to know you're not alone out there when fighting a health condition.

  7. Unfortunately, it is very likely that your blood work will be negative, since you really haven't been eating enough gluten for it to be positive. For an intestinal biopsy to be positive, you'd have to eat a lot of gluten every day for at least three to six months before you would get a positive. On the other hand, if your rash (beside the rash, really) is biopsied, that is another matter. A dermatologist would do that. If you are officially diagnosed with dermatitis herpetiformis, you automatically have a firm celiac disease diagnosis.

    Those cramps are likely caused by a magnesium deficiency. See if you can find a calcium/magnesium/vitamin D supplement that contains calcium and magnesium on a 1:1 basis.

    You ought to have your levels of essential nutrients checked, to see where you need to supplement. Because celiac disease causes malabsorption of these nutrients you are likely deficient in quite a few. Ask your doctor to test for levels of ferritin (iron) and hemoglobin, vitamin D, vitamins B6 and B12, vitamin K, potassium, calcium and magnesium. Also, a bone density scan is a good idea.

    Really though, you figured out four years ago that you are gluten intolerant. Why not just keep doing what you have been doing (without cheating, though), rather than now chasing after an 'official' diagnosis?

    You know it is likely celiac disease, or at least gluten intolerance (some doctors want to remove that distinction). Just make up your mind that from now on you will be completely eating gluten-free, and your rash will likely clear up. You have probably kept it going all these years because you occasionally eat gluten foods, and because you weren't too concerned with rye and barley.

    It is possible to make all those favourite foods you would like to have in a gluten-free version. And even if you make those for your whole family, they would probably not even notice the difference.

    Thank you so much for all of the good advice. The biopsy of the area next to the rash sounds like a much better way to go to test for celiac disease (so much less invasive than the endoscopy biopsy which I WAS scheduled for Tues). What a great website resource you have here. I reached out for help and found it. Thank you for making me feel better when I felt like yet another doctor was failing me. I'm definitely going to talk to a dermatologist. I've had the rash for 10+ years, it never goes away completely, and the digestive doc seemed to think it was dermatitis herpetiformis. Thank you for letting me know I'm not alone with this crazy diet!

  8. The time needed to consume gluten prior to blood or biopsy seems variable but definately a matter of weeks....

    The accuracy of both in terms of false negatives increases ... the longer you are on the gluten challenge.

    IN your case it really depends how much/often you cheated ... but even that is very subjective.. even if you had a food diary for the last 3 months I doubt we could say yes/no.. unless you were eating some everyday.

    I would seriously consider postponing the tests for at least 2 weeks...

    As for the biopsy... I'd definately wait for reliable blood tests and consider not bothering with the biopsy if you are not bothered about joining CUK and getting free food on the NHS (assuming your a Brit for your name)...

    The biopsy might show the extent of damage ..., it might be a good idea to rule out other things as well but for actually diagnosing celiac disease its next to useless and in some ways worse than useless since by definition you need to cause significant damage to an important organ....

    If you do blood tests and your GP goes along you can do them say every week or fortnight... and stop the challenge as soon as they show abnormal results.... if they are not showing abnormal results then its 98% certain you don't have celiac disease and hence doing no damage ... if you are you can either schedule a biopsy ASAP or not.. (if its a matter of a few days then why not?) ..

    The only problem is if blood is +ve and the biopsy -ve .... and this is the real problem with a biopsy.. unless the damage is huge there is a good chance to miss it.. so you need to ask yourself and your GP what if....

    I strongly suggest this is better done BEFORE the tests.... since after the GP has a nice -ve he can decide to take... instead of the other +ve... make it clear first that the biopsy is just a follow-up for the amount of damage...

    Look at it like this.. if the blood test is +ve and the biopsy -ve its 98% certain that if you keep eating gluten and foir some reason die and they do a postmortem exam of the intestine they would find dmaaged villi ... that could have easily been missed the day before in a biopsy...

    The only real way of making the biopsy more reliable is doing more damage to yourself...

    Don't get fobbed off that its OK, this damage repairs... usually it does... not always... BUT also in the meatime you can trigger other problems such as neurological or thyroid... and these associated symptoms will probably not reverse or certainly not quickly!

    Thank you for the good advice. From everything I'm reading it appears my new doc. is not really up to speed on celiac disease. I've been avoiding wheat for the past 3 years, but have probably been ingesting gluten in small amounts. A cooking sauce I used earlier this week had Modified food startch and a couple of other suspect items and I was unwell after eating for example. I'm a Brit living in the US and I have insurance but have to pay sizeable co-pays so I will definitely take your advice and re-consider the necessity of the biopsy or at least find out whether my doc is looking for the damaged villi (sp?) I took the blood test yesterday and I think I will see what that says (should be back in the next couple of days) and if positive I'll do the scheduled biopsy Tues, and if not, I'll postpone. I'm experiencing some other symptoms that may or may not be related to celiac disease so I was hoping that if I had a diagnosis I could at least get some of these doctors to pay more attention and not just blow me off. I have terrible foot cramps several times a week (my toes curl up and it's agony). The other day I was going through airport security and had trouble walking the cramps were so bad. This has been going on for several months and I'm reading muscle cramps an be related to celiac disease sometimes due lack of absorption of nutrients. My GP is clueless as to why this is happening. It's just shocking to me that so many of these doctors are ignorant of celiac disease, even my new so called digestive disorder specialist who knows what it is, doesn't seem to have the knowledge for when to test. Disappointing to say the least. Now that I'm armed with more information I will try to discuss these concerns with the new doc. Thanks again, your advice is appreciated.

  9. I know that for a blood test or colonoscopy you need to have eaten gluten. Sometimes a true diagosis helps people not cheat but it really does not matter in the end unless you need the official word, BritChick. Good luck!

    Thanks for the reply. I've seen references regarding "the gluten challenge" so I'm off to research whether it's something I can tackle prior to Tuesday or if that's too late in the game.

  10. Hi. Just discovered this website today. Like many here, I've struggled with digestive problems for years. Been diagnosed with spastic colon and put on phenobarb, anxiety and put on paxil, IBS and told to eat more fibre. 4 years ago when my quality of life seemed miserable (I couldn't eat an orange without throwing up, waking up nauseous almost every morning, running to bathrooms in restaurants after eating and having to hang out there while my fellow diners wondered where I was) I went to a basic diet and discovered wheat appeared to be my problem. 3 weeks after eliminating wheat from my diet my digestive problems seemed cured! I couldn't believe the problem was that simple. For the most part I've been wheat free and practically gluten free by assocation since 2003. Recently while researching wheat free recipes I found celiac information and read about celiac rashes. Well I've had a rash for over 10 years that comes and goes from behind my knee and it's just like the celiac sites describe for gluten allergies. The rash never goes away completely and when I accidentally consume wheat (or am naughty and pay later) the rash resurfaces with a vengance. This spurred me to action to see if I'm celiac. I just took the blood test today and am scheduled for the biopsy Tuesday. My concern is that with little gluten in the diet will the results show properly? I have the rash which I assume is an indicator that all's not well, but I noted from some postings that people were loading up on gluten foods prior to testing. I ate a cobbler for dessert 2 1/2 weeks ago (it was my wedding anniversary and I couldn't help myself) which kept me up 2 nights and made me terribly sick for about a week and my new doc. says this is sufficient gluten in my system. Does anyone have any thoughts on whether I should be eating gluten foods prior to testing? Part of me feels that it doesn't matter what the tests show I think the diagnosis fits, but part of me would like to have that confirmation to know I'm on the right track. Thank you in advance for your thoughts and comments.