A month gluten-free is not very long at all. Celiac is a great mimic and the symptoms can vary wildly. My symptoms were neurological in various forms. I have been gluten-free just over 2 months and still have many symptoms. I developed NEW symptoms after going gluten-free (vertigo/lightheadedness) that seems to subsiding somewhat. You won't get better overnight. That being said, I can't speculate if it is Celiac, if you have other food intolerances because everyone is SO different. However, I would definitely give it more time before I started worrying too much.
First, I am so sorry about the jerk. You sound much better off without him, although I know how hard this can be!
Re: excited with diagnosis, YES!!! I had NO GI symptoms. I lost about 28 pounds from Feb to August without trying, developed crippling anxiety, depression and insomnia and horrible painful neuropathy in my feet. It was so bad I thought i was going to end up in a wheel chair. I thought it was MS, Cancer, brain tumor etc, so I was VERY relieved that it was celiac.
Things will only get better from here
[ But in the grand scheme of life, I really got lucky. My disease is treated by eating healthy foods. No meds required.
We can do this. This is why the forum is so helpful - when I need a reminder of how much it sucks but how well people are able to do with the diet, this is where I come. This is a place for grounding yourself.
You're not alone. Planning ahead and having foods available that you know you can eat helps a LOT. You can do this. We are all doing this together on this forum. Stick with it. It gets better.
You hit the nail on the head...I had no GI symptoms, only neuro (bad, BAD neuropathy, depression, anxiety) and weight loss, so I thought it was cancer, MS, everything awful. I was so relieved that it was ONLY Celiac!!! I need a kick ion the a** sometimes reminding me of this fact! I love food, I love bread but I love life MORE and don't want to do anything to jeopardize my health!
Ok, my husband and I are in turmoil about what to do...
Here's a recap of our story. Our daughter's bloodwork and biopsy showed early stages/symptoms of celiac (she didn't have any symptoms - diarhea, etc). She's been on a gluten-free diet for 7 months. I just got back from the GI appt and he said based on these two things we are lead to diagnose celiac, however, he can not confirm it. He said we could put her back on a main-stream diet and see what happens (if symptoms arise she'll go in for another biopsy right awa, if no symptoms arrive then she'll go in for a biopsy in about a year). The idea of putting us all thru that again doesn't sound appealing, however, the idea of having an unconfirmed diagnosis and forcing my daughter to live her life as though she has celiac even though she may not doesn't sound too appealing either. We could do a genetic test and if it came back negative then she does not have it, however, if it comes back positive it's inconclusive....
Hello! I am not sure I understand-if her blood work and biopsy indicated Celiac, she has it. There are many Celiacs called "silent" celiacs that have little to no symptoms and the celiac disease comes out while they are being tested for something else. I had no GI symptoms, none of my Dr's can believe I have Celiac disease but it is what it is...Even if there are little to no symptoms, damage is still being done to the intestines and it may not remain silent forever. If there was damage during the biopsy, then it isn't necessarily early stages. can you post a few more details about what the blood work and biopsy results stated?
So the report said "total villous atrophy" and I saw pictures of what it looked like (mine-no folds but with veiny looking patches) and what it should look like (smooth with folds and like the inside of your cheek). Dr. couldn't believe that I only had symptoms in the last 6 months and never heard of neurological presentions like my neuropathy. Didn't seem to wonder about other symptoms that I may have (since only GI symptoms were poor appetite and weight loss), which is too bad because I bet there are other patients out there that have the crazy symptoms that I had (incl. depression, anxiety etc). I guess by the time they get to see him, someone has ferreted out the problem.
He then said "ok, you have to see a dietician, see ya" basically and that was it. ALmost brusque!
The visit was very short. Thanksfully my GP is wonderful, so I will work with her and take it from here.
UNBELIEVABLE- i prolly would have been a real sarcastic B***H if that was my neurologist- what the HEY?????
ALL your numbers are CLEARLY positive!!!!! get your biopsy ASAP- and then go Gluten Free- it's time for you to be on your journey to perfect healing-
JUST RIDICULOUS- i just cant believe the ignorance- people just dont know anything about Celiac over here in Corporate run U.S.A.
i recently had dinner with my DISTANT British relatives. my (2nd uncle?) asked me if i liked the pasta- i said i couldnt eat any gluten... and he replied "Oh is it Celiac?" it was such a nice change to hear someone know what it was & not have to explain it all.
try to brush the uneducated remarks off- you'll be on the road to feeling better real soon
thank you...i was so overwhelmed by the neuro, all i could do was cry. and i am actually in canada, so with our health care, it takes FOREVER for anything to happen. June 7, my GP got the blood work and scheduled the referral to the GI. GI appt. for a CONSULT only was going to be Aug 31st and the biopsy scheduled sometime after (usually a few months)...somehow they moved the biopsy up to the 31st w/o a consult and coincidentally, I was to have a colonoscopy in November (routine, my dad died of colon cancer) so I am actually getting both at the same time. I never wished for someone to find a disease in me so much in my life. I used to be so healthy and active and now I am just a mess.
thank you everyone for your support and comments and advice. i have been living in a nightmare where no one seems to understand how bad it is. my clothes are LITERALLY falling off of me and i have no energy at all to go shopping...and people have ACTUALLY said "people would LOVE that problem of weight just falling off for no reason no matter what you eat!"
I am scheduled for biopsy Aug 31. My symptoms have been bad neuropathy,anxiety, depression, weight loss (25 pounds since Feb) no appetite, some nausea,but no real GI symptoms like D though...My B12 and Iron were marginal and vit D was a little low. This all started in Feb of this year.
Went to neurologist for the neuropathy and he scheduled the celiac tests (along with a bunch of others), where I had a ttg>200 (normal <10) IgA gliagin 24 (normal <11) and IgG Gliadin 38 (normal <11).
Neurologist thinks something else is going on, said it definitely wasn't celiac (and is sending me to a rheumatologist because of an ENA result ) and says "well, even if it is celiac, going gluten-free won't help your neuropathy because you have no GI problems". I literally sat in my car and cried for 1/2 hour after that appointment.
Then at work on Thursday, my boss says to me after commenting on my huge weight loss "well, hopefully they have ruled out cancer, there are lots of markers for that these days". So when I said we were focusing on the Celiac right now, she said "well, I don't know....".
I went gluten-free for a month and felt like crap, anxiety, joint pain, awful (from late June to late July and I was MILITANT) but am back on gluten for the biopsy (it will be 5 weeks) and feel no worse. I am scared that I will never feel better. I wish that people, if they have nothing supportive to say just keep quiet.
WOW! I suffer from bad neuropathic pain as well, although i am not officially diagnosed yet (have biopsy on aug 31), so sill eating gluten
you gave me HOPE that i may see some relief. May I ask how you knew corn was a problem? And I am definitely going to looking into accupuncture as well!
This is great news!