jacqui

I saw Gary Gray at the Stanford Celiac management clinic. He does all lab work including gene testing day one/first appointment. The clinic was only on Mondays in AM I think. At least he diagnosed and then I went to local docs. I was pleased with him but others weren't. I needed diagnosis because up in Sacramento doctors were and are still oblivious! SHORT VERSION: I live in San Jose and am currently looking for a doctor to screen me for celiac disease. Can any of you folks recommend one that you've had a good experience with? I see a few listed in the doctor directory on this site but am unsure of what kinds of positive/negative experiences people have actually had with them. Please feel free to PM me or post here, I will drive anywhere in the Bay Area as needed. LOOOOONG VERSION: The extended version of my request is as follows. I'm a 30 year old male who has had all kinds of strange symptoms over the last few months. It started with some chest pains and tender calves in both legs, at that time a EKG did not turn up any abnormalities. Then I started seeing streaks of blood in my spit, and had a CT scan which detected sinusitis and a badly deviated septum. My doctor said the bloody spit was from postnasal drip irritating my throat. I took antibiotics (Avelox, Augmentin, and Biaxin XL) for a month, and the bloody spit stopped, but the sinusitis only partially cleared up. After that, I started having painful bowel movements and bloody stools. I had an anoscopy which found an anal fissure and hemerrhoids, and the doctor told me I was constipated (first time for this for me) and suggested I take docusate sodium stool softeners. That seemed to help the bloody stools some, and the painful bowel movements have subsided. Following that, I started feeling dizzy all the time and developed strange sensations in my feet/legs and hands/arms. The sensations alternate between burning/tingling and itching (without rash). My doctor tested me for vitamin D and vitamin B12 levels, and I was deficient in D and in the low range for B12, so I've been taking oral supplements of both for a while, to no noticeable effect. The neuropathic burning feelings have slowly become more frequent and widespread over the last month. I also saw a neurologist and had a brain and cervical spine MRI, neither of which revealed anything unusual (outside of some neck vertebrae degeneration which is more than expected for my age) that could explain the symptoms. I was tested for heavy metal toxicology and that came up with nothing. CLIFF'S NOTES: Today I'm still having the neuropathy (very bothersome) and have noticed some weight loss (I weighed about 140 pounds before everything started and lost about 8 pounds in the last few weeks). Bowel movements alternate between constipation and diarrhea, there isn't much middle ground. My doctor thinks I'm nuts and is chalking it all up to anxiety. He won't consider the possibility that it could be something else at all. I only recall the neuropathy starting after the month-long course of antibiotics and can't help but wonder if there's a GI tie in -- perhaps the antibiotics did something to my GI tract that led to malabsorption of nutrients and also vitamin supplements? Anyway I'm clutching at straws here and want to at least explore the possibility of the root problem being gluten intolerance. So any help in recommending a doctor who will at least screen me without thinking I'm insane would be much appreciated!

It may be the massage hitting a certain zone. Before I was diagnosed with celiac I saw an acupuncturist and after his treatment I would be totally wiped. I would fall asleep in car (my husband drove) and then go out cold for a few hours.

Glutino English muffins? Really?? Where do you fnd them? I love everything Glutino but have never seen the muffins. We get Kinickkinik(sp?) and they are a bit greasy to me. Thanks!

I agree with you. My blood sugar is low but my doc's dismiss everything. I get very shakey and irritable when BG is low. Thanks though....

Other gluten-free cereals... Rice Chex is now. This just occurred in the past 2-3 months. Little Einsteins is but we cannot find it anymore anywhere. Fruity Pebbles too

I slept for 5+ months for 20+ hours a day! My husband would wake me for meals and I would fall asleep while eating. I cut back on gluten because I joined Weight Watchers and carbs count as a lot of points. I did not know I had celiac until 4 months later. So when I cut back/very close to elimination of gluten I slowly stayed up more. Eventually my sleeping went to 4 hrs a day to 3 to 2...Now I may or may not nap but I am tired all the time. The first time I was glutened I was in fetal position for 4 days and slept them away too. Last time I was glutened I do not know if it helped but I evacuated my system and all I noticed this time was my balance was worse then normal. So I don't know if it depends on what gluten (wheat, barley, oats or rye) you get glutened with or the amount that may effect different symptoms. Does that make sense?? Take care, Jacqui

ditto regarding insomnia. I was dx'd in Dec. 2006 and learned from here too that many C's have insomnia. Very bizaare

I keep forgetting but I too just recently had 2 lypomas removed from each flank that they were not sure what they were until they were removed and luckily were benign.

Sorry to hear all this but I am very interested to learn from you b/c I have many of the same symptoms. I was told by my celiac disease GI that I have leaky gut or probably have leaky gut...I can't remember. I also have had new symptoms since all this started ~2 years ago, which are the ones you write of. We are strict gluten-free for ~1 1/2 years. Do not stress yet b/c it may be nothing and stress will just cause more damage. Good luck and God Bless! Jacqui and Family

Hi All!! Thank you very much for your input and your experiences. M was gluten-free for a week and then went to Santa Cruz with friends for 2 1/2 days - even I could not forbid the Boardwalk funnel cake!! But other than that and a small piece of pizza with salad and NO crutons she is back to 100% gluten-free. So far behavior waxes and wanes for the most part, but then again she has not truly been gluten-free for any time period other than above. Please keep me informed of anything you know. I really truly appreciate it. Jacqui

True, I forgot about implant bleeding. I had PAINFUL implantation, so the ER doc thought it was endo again but nope it was baby #2.

BRAVO!!! A family member that wants to learn and help. You have no idea how great it was to read your note. I know you hate to see him this way but in do time he will improve. At least everyone that I have read about or met all improve sometimes it takes a couple weeks to a couple years but at least their is a light at the end of the tunnel. My in-laws want nothing to do with it and do not understand why they cnnot give my daughter a burger bun every months or so. As for me they think it is in my head. My Mom either gave me the gene for Celaic or gluten sensitivity an my Dad the other, but both sides of the family say they do not have it. I guess no one wants to say it is "their fault". Which I have never felt it was anyones fault it is just genetics and I just want everyone to find out if they have it or if they have the gene so they can take care of it and start healing. My sister denied she had any symptoms yet when she finally was tested 10 months later she was anemic, osteporosis (35 y/o), vit. defieciences... Now she realizes she did have symptoms after all and she feels much better being Gluten free. Good luck and hang in there!! Jacqui

Mine was always brown. I have a history of endometriosis and my periods were probably the same as yours. I had a period my 1st pregnancy. The doc told me my due date and I told them but I had my period at this time so shouldn't I be due the following month. They told me some people have periods... Madeline was born 3 days before due date at 8lbs. 6 oz's and she'll be 9 y/o on Sun.! Also, my 1st happened quickly which shocked the poop out of me! I quite the pill 3 months (after being on for ~11 years) before we married and he was in CA and I was in NY, so no hanky panky went on before. 8 weeks into our marriage I was like "I can't stand my new husband and I don't really care for you either...This tastes disgusting!..." Also urine pregnancy tests are not very acurate when it is very early in pregnancy. Ask your doc for a blood test. I new for all 3 at 4-5 weeks gestation. Blood was + and urine's were inconclusive or -. Good luck, Jacqui If you are Catholic or believe in the Saints St. Gerard is the Patron Saint of Mothers. I have had a couple friends pray to him after I gave them his prayer card. They became pregnant shortly after and this after they had several miscarriages!

After I was diagnosed my sis ter kept denying she had celiac b/c she did not have symptoms or so she thought. 10 mos. later she was + for celiac disease, anemia, osteopenia, vit. deficiences... Since gluten-free she is feeling much better and relized she did have symptoms after all but she just thought it was normal ie bloating to looking pregnant after eating-she just thought she ate too much... She also became sick going gluten-free at first. Every "typical" symptom of celiac disease she had on a gluten-free diet!!

Hi this did not cut and paste right I don't think, so just e-mail me at home from your email and I will send as an attachment. jacqui5129@comcast.net Welcome! It does get better. I went through I guess like a drug withdrawal. I would dream about cheesy garlic bread and wake up salvitaing. Sorry, I will probably overwhelm you but I have been through hell since September 2005. I was opposite of most Celiacs, I went up to 153 lbs. and my norm is 120, I slept for 20+ hours every day for ~6 months, I walk like a drunk (2 years) and use a walker or cane depending on where I am, numbness/tingling, memory loss, dizziness, migraines for 2 months 24/7, severe bloating, pain, constipation, and I have probably left a couple out. I had some typical symptoms of celiac disease plus the rare symptoms so was misdiagnosed until April 2006. I was picked and prodded for months even had a hysterectomy per my GYN thinking that the severe abdominal pain was b/c of scar tissue. Finally after that and an ER visit with severe abdominal pain and vomiting my GI doctor reluctantly did the scope on me which came back celiac disease and THEN he ordered the labs! I was actually diagnosed with IBS ~12 years ago, which is the most common diagnosis most Celiacs receive first. I probably have had celiac disease my whole life. Anyway that