My name is Kristin and I am new to the forum and joined because I'm really stressed and a little confused!

I started having GI symptoms around October 2012, and they have progressively gotten worse (constipation, bloating, cramps) .  I also had a general feeling of weakness and tiredness (very unlike me before all this started) and had occasional tingling in my fingers and toes. I have lost 12 pounds since September 2012 (obviously not on purpose!). On Feb 22 I went to a GI doctor who diagnosed me with IBS-C and sent me on my way to get blood work done. The nurse called me back about 4 days later and said "the only thing that was abnormal was that you were slightly elevated in your ttg for celiac, so maybe try going on a gluten free diet". So, I did that for three days and was already noticing I felt a little bit better. However, she called me again after those three days and said that my doctor looked at the labs again and wants to go ahead with an upper endoscopy to be sure. So, I have been back on gluten in preparation for that.

The past week had been pretty bad, my bloating and cramps have been occuring badtly at night time. But yesterday and today I have noticed muscle pain in my left leg as well as feeling VERY weak and exhausted.

I guess I'm just wondering: Has anybody else experienced a lot of muscle pain and weakness with their untreated celiac? And what are the chances my blood work is correct and that I do have celiac? My upper endo and biospy are next wednesday, march 13.

Thanks for anybody who takes time to help me out!

Kristin

Hi!

my two year old used to have some form of gluten sensitivity, it greatly aggravated his infant eczema. However, about 4 months ago the small amount of eczema that remained around his ankles no matter what went away. I reintroduced a small amount of gluten into his diet and he seemed fine and the eczema never returned. I spoke with an allergist and she felt that it was likely he had outgrown his gluten sensitivity and there was no reason to avoid it any longer However, beginning around the last week and a half he has started having very smelly, extremely sticky stools almost every time he has a bowel movement, and he's had two episodes of small amounts of regurgitation (though gluten was not in the food he spit up either time). So, my question is, can it take a while between the introduction of gluten and the onset of symptoms? Four months seems like a long time to me but I don't really have any other ideas at this point as to what is causing the really messy stools. 

Thanks for any personal experience or insight you can offer. My son has other medical issues so I'd rather avoid unnecessary testing and don't want to test him unless it looks strongly like this is the problem. He does have another food allergy so it's also possible he's developed a different allergy to something else, too.

so as I was catching up on my state news, there was an article entitled Healthy Dialogue: Don't be afraid to speak up to your doctor

thought it might be a useful read, but I'm not sure how long the link will be valid before it goes into the archive section of their website

http://www.delawareonline.com/article/20130305/HEALTH/303050005/Healthy-dialogue-Don-t-afraid-speak-up-your-doctor

we really have to be our own advocates 

Here are some pictures of the rash I have. It starts out just itchy skin but then little fluid filled spots pop up. They are incredibly itchy. I cant stop myself from itching and most creams or remedies make it worse. The way it looks now is after I scratch it all open on my sleep, I wish i had a picture of the fluid filled bumps. Then it will heal all up (leaves discoloration for awhile and scarring) and slowly disappear or flare on and of for awhile. I have been having it happen since I was a pre-teen but the doctors all would either say they didn't know what it was or that they think its eczema or atopic dermatitis. It happens on elbows, fingers, feet and occasionally on legs. I never made the connection to gluten until this recent outbreak was triggered by eating gluten for a week. (other symptoms are stomach upset, brain fog, mouth sores, bloating, nausea, fatigue, hair loss, easy bruising and vitamin d deficiency)  Currently it is on my elbow, where it is most often but otherwise I will get the little fluid filled blisters randomly on my hands or other areas individually. I scheduled an derm appointment for Tuesday in hopes that they will do a punch biopsy and see if its DH. I have already gone gluten free because I noticed the correlation to my symptoms, so I cant do any other testing. I hope it doesn't go away again before I get to the derm. I tried looking up pictures of DH and other rashes to compare it, and I just end up confused. It seems like there are multiple types of DH or that it morphs different ways?? 

My 14 year old daughter tested negative on the celiac disease blood test panel, but has always had skin rashes including Keratosis pilaris on her upper arms for several years.  She also complains of aching joints. Since both her brothers and I tested positive on the celiac panel and have been dx with Celiac disease, and our home is now gluten-free, I convinced her to do a month long gluten free trial. After the month the Keratosis pilaris is almost completely gone, but her aching joints haven't changed much (sometimes she thinks its better, sometimes she's not sure). The plan was that she could go back on gluten this month, so that's what she did, mostly at school, to see if she had any reaction or if the rash returns. She hasn't really felt different so far, but is considering another trial, especially if her Keratosis pilaris returns. Any suggestions on how long the trial should be to see if it really helps with her joint pain?  Also, are there any  different testing she could do outside of the celiac panel that you'd recommend? She says if she had a positive test she'd be willing to go gluten free for good, but is reluctant just to do it just to get rid of the Keratosis pilaris, which looks bad, but isn't uncomfortable really.  I worry that this is just the tip of the iceburg, and even if she still tests negative, getting off gluten now would be the best for her long term health.  Thanks for your help!

I have some questions on testing that I'm hoping someone can answer for me...Can a person have a positive TTG blood test for no reason?  If a person has a positive TTG, and 1st degree relatives that have celiac disease, but has a negative biopsy and no apparent physical symptoms, is it really safe for him to remain on a gluten diet? Are just the elevated TTG antibodies a concern, even if no damage can be found? If the person did a gluten free trial, and his TTG returned to normal levels, would this indicate that he did indeed have celiac disease and should continue to avoid gluten?  Thanks for any insight you can provide!

I've been perusing these forums for quite some time now and finally mustered up the courage to post. I'm just wondering if you guys think this would sound like celiac's disease or potentially something else.

Symptoms that I think are all possibly connected together started about 8 years ago with a random onset of Dermatographic urticaria (skin writing). It came for about 2 years and then suddenly stopped (i'm apart of the lucky 5% where it goes away). About the same time period when the DU stopped, I started having messy BM's which were pretty bad for about 4 years, and somehow I have managed to improve that over the years by eating more healthy in general, but it still remains today. Then about 3 years ago Post nasal drip started one day and never went away. It's extremely annoying and I believe it's my body telling me something is wrong. Due to stress and PND my throat gets very tight sometimes and even my voice gets higher because of it. It becomes very cumbersome to speak. I am a 25 year old male, and I also suffer from hair loss and acne that is always on the verge of breaking out even though I take really good care of my face. My doctor diagnosed me with ADHD. I have brainfog that is difficult to overcome, and a lethargic way of thinking. For example, when it comes to checking my to do list, even the easiest things get put off.

I've had a colonoscopy about 3 years ago looking for any kind of damage, but none was found. They did not perform an endoscopy. 

I've been gluten free for 3 days. I do not know if it is a placebo effect or not, but I feel a little bit healthier and think a little bit clearer. It has been easier for me to communicate with other people. I have social anxiety, but that has subsided a liiittle bit. The post nasal drip is still there, but it feels like it miiiiiight have thinned about a liiiiittle by a fraction, or at least changed somehow. I still have to swallow just as much though. 

I was hoping the post nasal drip would go away within a few days. Does anyone have experience with this? How long did it take for yours to go away? And if this isn't Celiacs, what do you think it could be? I know we are not doctors on this forum, but I am hoping your personal experience can help me out. Any help is much appreciated.

Sincerely,

-Distressed Forum Poster

Hi, I am new to the forum.  First, I have known that I have some type of gluten sensitivity for awhile, if not celiac.  I have constant back pain, and I have noticed it increases or decreases according to my bread/gluten intake.  Also in college I avoided EVERYTHING the bakery made because I learned from process of elimination that withing 30-60 minutes of eating their delightful bread I would get stomach pains that made me cry and literally fall down wherever I was.  Sometimes I would be walking to class and have to just sit down on the sidewalk for 5 minutes until I could walk again.  That being said, I have had about 4 doctors in my life tell me to either go off gluten or suggest I get tested.  I always blew it off because, honestly, I thought "gluten intolerance" was just a new fad-type diagnosis (ignorant, I know).  So recently I have changed my mind.

I try to tell people "I am healthy."  I do not drink, smoke, or use drugs.  I am vegetarian   I exercise about 4 times a week.  I am not over weight.  I never eat fast food or overly processed food.  I don't buy "junk food" I have had fitness test conducted and in all categories I am above average for my age (32).  On paper I am healthy.  But healthy doesn't feel like this.

Healthy isn't loosing all her hair!  

Healthy doesn't bruise when I butterfly lands on her (exaggeration)

Healthy doesn't need 10 hours of sleep at night

Healthy doesn't have constant back pain, and joint pain

Healthy doesn't have uncontrollable acne

Healthy don't feel anxious all the time (even with therapy)

Healthy doesn't feel foggy all the time

Healthy doesn't get random debilitating side cramps that feel like a butcher knife had been stabbed in her stomach

Healthy doesn't go to the ER with those cramps just to be turned away when nurses tell you you just needed to have a BM

Healthy doesn't have two consecutive miscarriages after an extremely easy time with their first child.

Healthy doesn't then have doctors tell her she isn't ovulating, then she has endometriosis (when she's NEVER been told that before)

Healthy doesn't get constant bladder or yeast infections after going on bread binges (Yes I have noticed they seem to coincide)

Healthy doesn't have constant allergy symptoms dispite going to two different allergists, having allergy tests taken, and being told she is not allergic to anything. 

--constant sinus drainage, 3-4 sinus infections a year and itchy eyes

Healthy don't feel like she is always in the verge of getting the flu.  Like my body is always fighting a bug

SO those symptoms being put out there.  I have decided to go off gluten for 60 days and see how I feel.  I know now that this is not the best way to approach things.  Thanks to this forum I now understand why testing is so important.

However, I have been off gluten for all of 5 days.  I have already noticed my face looks better (not as inflamed looking).  My back pain was better until this morning (the Rice dream rice milk I had last night is not gluten free).  And this morning when my son woke up I didn't feel like I needed an additional 2 hours of sleep on the couch.

SO my questions is. . . . How long after being gluten free did YOU start to feel relief from some of your symptoms?     

I know everyone is different.  But I would love to here about other's recovery time.

Thanks.

I have found this forum AMAZING.  I wish I could reach through my computer and give you all a hug

Jump in....the water is warm!

What can we do to help you?

Curious, when you react to something how long does it take for you to be sick.  I am asking specifically for people who get diarrhea as a  symptoms.  I am very very sick this morning, my reactions don’t seem to be always happening right away.  It seems to me the next day that I am very sick.  I meet with GI Dr. again on Wed. I hope they can help me, figure out what is going on.  I am scared that I could have Chron’s disease I think a colonoscopy is in my very near future.  I have already had an endoscopy and my gallbladder removed in Jan. here we go again.

I don't know if I'm in the right place, but I've spent some time browsing here and know you guys have a lot of information regarding all sorts of immune issues so I figured this would be the best place to go. 

Testing- I need an at home kit. Which did you use, did they find anything?  I called an allergist this morning and wanted 350-400 just for an appointment, and I have no insurance.

I suffer from EXTREMELY severe eczema and have all my life.  Covered- head to toe, face, neck, and all the other usual places.  I need to know why.  I have been getting blisters on my lower lip about 10-15 minutes after I eat (I always have) but I decided to start taking notes on when it would happen consistently.  Processed chicken nuggets are the worst offenders, Lipton cup of soup, guacamole, some forms of vitamins.   

I'm sort of at my wits end here.  

I'm obviously allergic to something, I don't have a clue what it is (dairy?), and use the "free detergents."  I have no digestive symptoms just the blisters and severe eczema.

Can any of you guys shed any light?  Thanks so much in advance.

Hi,

Im new to this and ive been tested for coeliacs disease and other things. I got my results back today and was told i had to make a non-urgent appointment. Is that normal for doctors if you have coeliacs or could it be something else?

Im been worrying about it all week, not knowing why i feel like cramp most of the time. I am worried that if they are negative what could be causing my symptoms.

Doctors are like SURE I have this, they are just going to do a biopsy to confirm in 9 days. I show ALL the symptoms and everything. No one told me what any of this meant til I googled it but I am SO BAD at this point (I am severely underweight and all that) that I am going to just put myself on the diet now and see if there's anything that improves before getting the test. I wasn't told this I heard the name tossed around and I decided to look it up. All I know is this matches everything I've been describing about how my stomach is and how I've been feeling. 

I looked up average lifespan for someone with this and it says if it's diagnosed late or if there is too much damage, then I might not live that long. 

I am 28 years old, and I am rather worried that this wasn't caught in time. What if it wasn't? If I start a different diet today and am strict with it, do I need to worry about not living a full life?

RIght now I am 5'9 108 pounds because of complications. I didn't know this was even a thing, I still don't know if this is what I have, what I do know is I started to show signs as a kid and then I went through years where they thought nothing was wrong because I was able to gain a ton of weight. What I do know is that I've ALWAYS had these symptoms they just got insanely worse after I went off of some medication doctors said I didn't need. 

Anyway, can anyone tell me if I need to be worried about dying young here? Cause yeah 28 is young but it sounds like to be diagnosed with this it's WAY too late. 

I went to the Dr. for my yearly exam. While there she feels my stomach and starts asking about stomach issues, my heritage, ect. She says she wants to test me for Celiac. I have a high ANA and various other autoimmune symtoms (mouth sores, rashes, joint pain) and they haven't pinned down what could be causing all this yet. Well, the test came back and she strongly advises I start a gluten free diet. If symtoms don't improve in a month or so, I am to make an appointment with a GI. Below are my lab results. I am just wondering if there might be something else, but this seems to connect the dots and makes sense. And Celiac has been added to my health record as of now.

Immunoglobulin A 113 (standard range 81-426)

Gliadin IGA 19 (>10 positive)

Gliadin IGG 33 (>10 positive)

Tissue Transglutaminase IGA 83 (>10 positive)

Tissue Transglutaminase IGG 1 (>10 positive)

Thank you all in advance. If it is Celiac, I can tell this place will be a great resourse.

Hello, my 8-year-old daughter was being tested for a pet allergy and her doctor did some blood work. Her allergy testing was all negative except for these results:

IgA Gliadin = 63.1

IgA TTG = GREATER THAN 100

EDIT: I forgot to mention the IgG Gliadin = 53.7

The reference value says:

Less than 20: Negative
20 to 30: Weak Positive
Greater than 30: Strong Positive

She doesn't have any symptoms that I've read about, but the allergy doctor has referred us to a gastroenterologist who says we need to schedule a biopsy.

I'd prefer not to do a biopsy if it's not necessary. Could she have celiac disease without symptoms? Is it necessary to do the biopsy? Is this something we should even be concerned about if it's not bothering her at all? Could those blood test results indicate a different problem?

I'm sorry for all of the questions, I'm just really unfamiliar with gluten/ celiac issues altogether. Thanks!

Has anyone used the product called "Genesure"? It's supposedly 99% accurate and tests your DNA via cheek swab for celiacs disease.

https://www.glutenpro.com/store.php

I have been reading through these forums as if I was studying for a final and one thing jumps out at me: How many posters state that they have to convince their doctors to test them. Why is this? If we go in with the money to pay for it or insurance, why not do the test to put us at ease or possibly (as was the case for many) finally provide a definite diagnosis so that we can start finding ways to get better? 

In some ways, I guess I have been lucky. I started getting pre-cancerous colon polyps at age 9. So if I call my GI, he schedules a Colonoscopy immediately. I also had been seeing a great Nurse Practitioner who, when I went in with my symptoms of extreme exhaustion, did a full panel on me (not for celiacs) and found out I was low on Vitamin D and B. She started me on B-12 shots immediately. I guess I'm trying to stay optimistic that when I go in this time, she'll be open to testing for Celiacs and that my GI, if necessary, will be open to doing the biopsy. 

I guess it just angers me how hard it seems that we have to fight sometimes to get tests done and find out what's wrong with us or how often we are dismissed only to find out later we were right all along. 

Maybe I'm being too negative about it since I feel so horribly, but it still doesn't seem right that we have to argue to have a simple blood test done. 

They say my ANA is fine so they aren't going to do the test. 

Meanwhile I'm sitting here, looking like death warmed over, having a lot of issues now. If you were to look at me I look like skin and bones. I've been sick for 3 days now, barely been able to get food in me. I need this test done. If I go to the ER at this point they won't run the test cause they'll just tell me to follow up with my GI doc or something, the GI doc I haven't been able to get ahold of for 5 days. I don't think that's going to change. 

How do I convince them to do this test? I did ask if they ran the specific test for it and they said no, cause due to my other tests they are saying I don't have it. 

I guess they could be right but a blood test will be faster at this point than waiting almost a week to get the GI scopes I will not make it a week with how I am. I am tempted to just go off all gluten and forget all of it since none of them are cooperating with me anyway. 

What's the big deal here? Why won't they test me?