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Metoo last won the day on December 19 2017

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  1. Well I have been gluten-free for a year....and it's awesome!! Except I am still having random right side pain (feels like a hernia or my ovary!)...I have been to my family doctor repeatedly for it. I went to anew Gyn for it...and she said based on my symptoms, bowel patterns she thinks I have a GI related issue.

    I have not been able to have regular milk for about 3-4 months now without planning on being near a bathroom all the next day! ( I have extreme urgency!). I noticed with ice cream it's becoming worse too.

    So...I think I should go get lactose tested. Where do you go to get the testing? Lab? Family Doctors office? Do you think it sounds like I might have it?

  2. I did not test positive for celiac, but i have a rash and it's obvious I can't have gluten.

    In the year I have been gluten-free my family has been 80% or more gluten free. I still buy them some non-gluten-free packaged snacks or an occasional loaf of bread.

    During this time my 5 year old managed to gain 7lbs between 4-5 years old! This is a kid who barely gains 2-3lbs a year, it finally pushed him up to a more matching percentile! (75th height/50th for weight!). He also has excema, his skin feels like sandpaper!

    I would like to get him tested I think. But I don't have a positive test to back me up. And he doesn't have a lot of symptoms.

  3. I am just curious! If anyone's doctor has diagnosed them on symptoms alOne?

    It's been a year since I went gluten-free! I am quit good at it now! I went 4 months without a glutening! My last glutening was a Tostito Mulitgrain chip the size of a silver dollar....it was enough that within 2 hours my pinky got itchy, by 5 hours I had broken out into the rash on my pinky! It only lasted a week....but I realized how much it confirmed that I cannot have gluten! It was actually a nice reminder (besides how painfully itchy the rash is...and annoying!)

    I could quite literally go to the doctor show him my clear pinky skin...go home and eat a cracker and the next day get rechecked with my rash! Lol! I just don't think any doctor would do it.

  4. I have recently had to go to a whole foods/non-processed diet due to my increased gluten sensitivity. I am one of those people who doctors do not think has celiac disease. The only blood work that I scored above normal was an IGG blood test(a pretty high positive). Negative on IGA's including TTG. Negative on genetic testing. No biopsy done while eating gluten because my doctor was sure my blood work pointed to non-celiac gluten intolerance rather than celiac. I accepted this diagnosis and was very happy with the disappearance of my intestinal symptoms when I stopped eating gluten. After abour 2 years, I began to struggle again and have been kind of on the run trying to stay ahead of the sensitivity curve, leading me after a lot of trial and error to a whole food diet which has helped a lot. I can't remember when I started having an angry, itchy, and sometimes painful red rash on either side of my nose where my nose meets my cheeks. I think it may have been about 15 years ago. Long before I eliminated gluten which was about 5 years ago. My doctor decided it was not Rosacea and gave me a strong antifungal cream which kept it somewhat at bay if I used it every day but never got rid of it. Well, with this final tweaking of my diet, the rash has gone away. Now I have gone back to wondering if I have Celiac after all and that they just don't know enough about it to exclude it with the current testing standards. I also have always had discolored tooth enamel with white bands. Lactose intolerance has also become a problem in the last couple of years. I know the location of the rash isn't typical for DH, but what do you folks think? Anybody had a similar rash?

    I 'had' a small 1" diamter spot on my hand, that would blister, peel off, be all puffy and inflammed looking...then repeat that cycle over and over. It hurt too! Hurt like a burn would. My doctor passed it off as stress induced excema, said he had never seem an excema patch that concentrated though.

    6 Months later I went gluten free and it dissapeared! Now it returns only when I eat gluten...and its spread it now covers more and more of my pink/side of hand when I eat gluten. (I am only on my 4th or 5th glutening) Now I seem to more sensative though too, bread crumbs were all over my kitchen from the kids...I broke out somehow from that.

  5. I was at 14, the bottom of the range for my test was 12. I was instructed to take D3 at 10,000 per day for 2-3 weeks (so 70,000IU per week)...then after that back down to 5,000 per day (35,000 per week). After doing that for 3 months I got up to 55!

    Then I backed down to between 5k-2k per day for maintenance. And within 6 months I was back down to 32. =( So I had to up my dose again. During the summer I usually feel pretty good.

  6. Hello! This is my first post here.

    My daughter who just turned 5 was given a blood test EMA & IgA after I mentioned her stomach aches. Two years ago our naturopath did a IgG on her and she came back off the charts for gluten and wheat. The chart ended at 325 and she was at 601 which is the maximum they measure. We tried going gluten-free to see if it helped with her rashed she was having. I don't think we were very strick and ended up going off it. I told my ped. about the IgG results and he basically said it was useless.

    So... the ped. says the EMA/ iGa show "strong positive". I did see a number of 320 on the sheet but I am not really sure what that was. I am hoping to have the results faxed to me tomorrow.

    I have a few questions that I don't think I can get answered by my ped...

    1./ How accurate is the EMA test? I just want a basic answer. I keep finding detailed info that I have a hard time sorting through.

    2./ Our ped. says to go gluten-free now. Everything I read says otherwise. We likely won't hear from the Pediatric GI specialist for a couple weeks and then it sounds like we won't even get an appointment until September!! The ped said that the damage will still be there in a few months so we can start now.

    My daughter is having more and more tummy problems and has even lost 2.5 pounds recently. She never loses weight... I feel so frustrated that I have to wait months to see someone. :( So I have to keep watching her suffer for a few months if we want to have a biopsy?

    My other daughter who is about to turn 2 has recently started having rectal prolapse and has also been constipated most of her life. I read that rectal prolapse can happen with celiac. My ped. isn't in a rush to have her tested and I don't get why?

    Any thoughts or advice would be greatly appreciated.

    1) The EMA test is over 90% accurate.

    2) If you want to go through with the scope, she should continue eating gluten. Scopes are also notorious for false negatives, so even if the scope's biopsy doesn't show damage it doesn't mean she doesn't have celiac.

    If it were me...based on the blood test alone, with symptoms, if your doctor will diagnose her with celiac..... I would take her off gluten since she would have an official diagnosis already at that point.

  7. We were fairly gluten free...then I decided to relax about it a little bit. I have 2 young kids, that I am going to try and get tested at their next doctor appointment in a couple of months...so I want them eating gluten. So I decided to let some gluten bread back into the house.

    it was a mistake. Apparently now I react to cross contamination, because my husband made the boys peanut butter & jelly on gluten bread....and didn't use plates. When I got home there was an explosion of bread crumbs all over our counter. So I carefully cleaned it up like normal, washing my hands 100 times, threw the dishrag immediately in the laundry basket. Well...it got me, somehow I got glutened cleaning up the mess. So....no more gluten bread for us.

    I am still letting them eat 'packaged' gluten items like granola bars, pretzels (although my kids make a huge mess for some reason with these so, we are not buying them anymore once they are gone).

    Its definitly a difficult line to draw. As soon as I get the kids tested though, we are going more strict gluten free again (besides beer for him). After the last bread explosion, I realize its more of a problem than I realized.

    And...your husband will probably lighten up about it. Mine is alright with it now...but I can't use a lot of gluten free replacements or he notices. Sticking to rice, corn pasta (he can't stand the rice pasta) and meats...the normal things that are gluten free he doesn't complain one bit.

  8. I am pretty much grain free, besides occasional brown rice now...and the extremely occasional gluten-free baked goods, which only happens about once every 2 months or less.

    My suggestion is, if you haven't already start tracking your food intake on something like calorie-count.com. I started doing that and found that I was just too low on fat. I started focusing on increasing my protein consumption along with fat and I feel a lot better! A lot better! I can tell the days I don't eat as well, because I feel like a slug by that night.

  9. Well I am going to eat out today. I have been strictly avoiding eating out for the last 3-4 weeks to get my DH to heal up. Its healed barely..and now I have 2 social lunch/dinner things going on this week. Today is lunch, which I pretty much think I am safe, based on things I found on here. I am starting to fear the DH, its not that its just annoying its only on a tiny part of me and each time it seems to spread out a little more...I am in fear of it now.

    I have another fancy dinner engagement Saturday, that I pretty much want to not go because the place seems so unsafe to eat at, I checked their menu and called them.. Its several hours long, with food, appetizers, drinks...etc. Well I can't drink and not eat! So I am planning to eat before hand, I don't want to bring in my own food because its a pretty formal dinner...now its just making me not want to go. Our good friends are going anymore either, so that makes it a less social event. Just Blah!

    But...I am so thankful for this site, at least what I can't find online about food, usually there is some post somewhere on this site about eating out at a particular restaurante...etc! I am thankful I can be informed before I make any food choices!

  10. I would consider seeing a dermatologist at this point, your rash does sound like DH. I would ask a Dermatologist to biopsy it...I would tell them you had GI issues for months/years, and that they were unable to determine a cause, and that you went gluten free...and now that are adding it back in your rash is changing/worsening. Ask them to biopsy it (they should biopsy it along a active lession). I would also ask the dermatologist to do the blood test for celiac, a FULL panel.

  11. After a good glutening.


    So yeah - unfortunately gluten will stop looking good once you make an association with pain. Probably :).

    Ditto THIS! After my 1st glutening....I never craved another thing in the cafeteria.. (I have DH and its so painful and terribly annoying while healing).

    You will get to a point you stop craving things....in the meantime though, buy yourself some Chebe Pizza Crust Mix. This was a craving lifesaver for me...I can now make pizza anytime I want it at home, and its less than $5 a pizza! If I start feeling bad about not being able to have things (like today everyone in my department went out to eat, and I didn't even though I wanted to because the place was a really unsafe place for me to eat, or even drink (brewery))...so tonight I am making pizza!!!

    And buy a bag of brownie mix too...I have 2 at home...and although I don't eat them, it makes me feel better I have that choice if I wanted to.

    About feeling bad...make sure you stop eating oats, even if they are gluten free. That was a major problem for me!

  12. I think fingers must be one of the worst spots to heal.

    I got a spot after the flu. It goes down, then if I wash dishes or do alot of food chopping it flares back up..each time getting more and more dh'ish.

    Try wearing rubber dish gloves and those food service gloves while cooking. Also, I out a band-aid on it and that helps, with a moisturizer.

    I'm back at that stage where it's peeling and dry. Ugh. Mine has cracked and burned and just looked awful.

    Washing my hands definitly does not help or doing dishes. I should try wearing gloves! I put lotion on afterwards and that helps a little, keeps it from drying out so much that it cracks open more.

    That is pretty much much what mine looks like "cracked and burned and just awful!" lol....

  13. Hi I haven't posted in a while, I guess I just need to vent. I'm so depressed because I keep getting sick. It's been about a year that I've been gluten free. I'm really careful, and I was doing pretty good for a while, but lately I've been getting sick every couple weeks. Maybe I'm getting even more sensitive to cc? Or am I even getting glutened at all? Maybe it's something else? I'm so sick of always racking my brain to figure out if/how I've been glutened.

    The rest of my family had food with gluten last night but I made myself a separate dinner. I did clean up afterwards, but I washed my hands when I was done. Normally I cook everyone a gluten free meal, but sometimes they have gluten. Am I supposed to just make my husband and kids be gluten free? That doesn't seem fair to them. (Hubby is careful when he eats something with gluten, but my kids are little so it's hard to get them to not be messy and remember to wash their hands or not kiss me after eating noodles.)

    I always wonder if maybe I'm ill because of something else and not cc. Does everyone go through this craziness of trying to figure out why you're sick? I woke up at 4 a.m. nauseous and burping and then I started vomiting and also had D. My mom took a day off work to come help me with the kids so I could rest. I feel like a burden on everyone, and I hate it.

    A couple weeks ago I woke up at 1 a.m. with the worst dizziness and nausea. It went on for hours. I ended up at urgent care and they said I had vertigo. Is it from gluten? Is it a migraine? Doc said no and no. What is happening to me?? I'm not eating any gluten! I have been exercising and trying to get healthy. I used to feel good after exercising and now I feel like crap. I am trying so hard to feel like a normal person, but every time I make any progress I get sick and have to start all over. So discouraged. :(

    first, how are your vitamin levels? Have you had them checked recently? Some of your symptoms could definitly be from a vitamin deficiency, including vertigo, nausea, lack of energy, not feeling normal during exercise (understanding that exersize does hurt, and doesn't feel great all the time =) ).

    I had a severe vitamin D deficiency, and besides not being able to excersize like I used to (I could not improve and I felt like I was dragging myself)...I was extremely fatiqued, a friend of mine was nauseated and puking for 2 months before her doctors figured out she had a level of 12..the bottom of their testing range!

    I asked some of these questions myself a couple of weeks ago, I am about 6 months gluten free, and I definitly think I am getting more sensative, my last glutening was from an extremely minor amount, and I believe I got CC after that. I am having to be much more careful.

    I like you, do make some gluten meals for my family. The majority are gluten free, I feel its healthier for my kids since they could have celiac, and not know it. However some things I just don't feel like depriving them of, or its just so much cheaper, or we just happen to have it. My last CC I think was from making my kids cookies for their school treat...somehow I messed up but I did make 4 dozen cookies too, but I didn't eat at all or after making them! ugh. My symtpoms are primarily skin, so it just lingers and hurts for weeks after something so minor, its very frustrating.

  14. I was glutened like weeks ago, I got my area where i have my rash to heal up. no more blisters...etc. There area was still discolored though

    Well then two weeks ago, I cut my finger where I get the DH/rash...and it was like it caused me to break out a very small amount, I got maybe 10 blisters....since then now the cut and the skin just doesn't want to heal. Normally from a bigger outbreak it takes me 4-5 weeks to heal, but this was very small, the blisters didn't entirely go through their cycle like normal...now I am just left with broken discolored skin.

  15. I am a new member here. Before posting i have read alot of the post on these boards and they are extremely helpful. I was so frightened when my doctor said the words "celiacs disease". I was going to the doctor originally because i had bloody stools and stomach pain with bloating and constantly having bowel movements after everything i eat. So I had an endoscopy and colonoscopy. Colonoscopy was fine but the biopsies from the endoscopy showed possible celiacs disease. My doctor ordered me to have a capsule endoscopy ( the weirdest but really interesting). The results from that showed my villi were extremely damaged. So the doctor ordered me to have the blood test done. So, now to the point, I go to the doctor today to find out the results from my blood test. I have been doing alot of research on here so i think I have prepared myself a little, but I am still a little nervous. I am 27 and female and have a big, extremely italian family. This will be a lifestyle change for me. I guess I will have to start bringing my own food to family gatherings because i know they will look at me insane if I try to change family recipes.

    Ok I am rambling on. But my point was that I am new to this and could really use some advice, words of wisdom, and whatever you think would help me out!


    Well, keep in mind the blood tests have a 30% false negative rate, so as my doctor said, if you have 100 celiacs in a room, it will only identify 70 of them...the other 30 would have a negative blood test for celiac, even though they have it! So no matter what your blood test, you should go probably try gluten free.

  16. Its not fair, and it stinks. But you should go and just not eat if you aren't comfortable with ordering a salad. (which I understand... my last glutening was a salad, and I still don't know how..but it happens). I often go and just get a pop, if they want to complain about you not eating, then just say simply (unemotionally) I can't eat anything here, I have a few restaurants I can safely go to.

  17. HI~

    I'm new here and have had undiagnosed issues for years - last 5 have been a whirlwind of "I've never seen that before" symptoms. Father & his sister had type 1 diabetes & died at 43, so naturally I am terrified of that diagnosis. Sister has discoid lupus, bro now Type 2 ? diabetes with horrible neropathy & nerve damage. Niece has psoriasis.

    Latley docs blame mine on menopause, but I keep telling them thers is something autoimmune going on. Have a bit of osteo arthritis in knee, but fluid drainage & yoga has helped that. Been very active all my life.

    My symptoms include "traveling" joint pain, fatigue, dry mouth, inflammation, weird rash on trunk of body & side of face, accompanied with extreme fatigue & gut ache- this typically lasts 4-5 days and is gone. By time I get to doc, rash is gone. Finally saw dermatologist that said she had never seen anything like it! Did all types of Lyme disease testing, mercury poisoning, etc. Next step is to do skin biopsy when comes back-

    Supporting my brother I went with him to wonderful clinic 4 hours away. I have had burning feet & pin & needles & edema. Neurologist there did test & said I had some nerve damage. Ordered blood work & found very low in B12.

    Did research & found joint pain, nerve damage sign of low B12. Eat plenty in diet, so not absorbing it.

    Started weekly shots. Good news blood sugar was excellent! Follow up w doc here ..tested for iron, anemia, etc . no problems. But celiac disease test showed:

    TTG AB, Iga 1.3 Under 7 neg.

    Gliadin DGP AB iga 14. 4 over 7-10 positive Flag H

    Iga 607 standard 87-474. Flag H

    Is 1st test the standard talked about? Doc said she had never seen such a high Iga number in 16 years of practice.

    I have NO gut or bowel issues. In fact, I seem to have a strong stomach compared to most of my friends.

    Can anyone help decipher this?

    Referred to GI and wants me to do colonscopy (why no endoscopy?) which insurance doesn't pay...goes to deductible which is very high ( so are our premiums- but I bet most of you know this problem already!)

    Waiting as my son has had stomach problems, on and off for 2 years. Started in college & stress totally adds to his issues. He is scheduled for endoscopy this week.

    Meanwhile, I will try gluten free diet. Couldn't hurt, right?

    Any info or comments would sure help....


    I am no expert, but your blood work shows you have celiac. Usually doctors require the endoscope to diagnose you, they won't just rely on bloodwork alone, but endoscopes can have false positives. Your son probably has it too, its genetic.

    Do NOT go gluten-free until you are done with testing.

    Many people don't have gastrointestinal symptoms, or are fairly symptomless, but there is still internal damage going on.

  18. I figured it out. I had stopped taking a supplement. That has to be it.

    If you still don't feel better after 2 weeks or so of supplementing, you might want to get your vitamin levels checked, vitamin D deficiency can cause fatique, and mine was so low that no regular supplement alone would have ever brought my level up, according to my doctor I had to take mega doses to get it to raise.