V123

Thank you,

I will be more careful with contamination. I was tested for crohns and negative 

Hi, 

I had a negative endoscopy as said in last posts. I am on an elimination diet through my dietician, and I haven’t been eating gluten. It’s been three weeks since I started, and I haven’t gotten measurable symptom relief. I’m starting to get worried that gluten isn’t the problem, and going back to square one. My dietician seems to be worried that I haven’t been feeling better. Some things have improved, like constipation and hot flashes, but this could be due to eating healthier. Is it abnormal? I also got blood tests done yesterday, one for lead because my school found lead in our water, one for Lyme to be safe, even though no one thinks it’s Lyme, and one blood test for my blood sugar because it was high on a non fasting test so they had me do a fasting test. Also, i got a rash yesterday on my arm after only eating a smoothie after my tests. I couldn’t take a picture because i was in school, and it’s faded now. 

On 3/5/2018 at 9:44 PM, mjp922 said:

Hello everyone! 

I have realized that I have some symptoms that I have been told might be linked to Celiac disease. I am unsure how long I have had all of these symptoms, partially because I was simply not paying attention until the thought crossed my mind. I have not, however, been tested, firstly because I do not want to incur medical bills as I was just recently in the ER for something else. But I know I probably should. 

The following are some of my symptoms and see if they sound familiar, or if anyone has experienced the same. Do you think I SHOULD be tested, based on these symptoms? I know that I could find a list online of symptoms, but I'd rather speak to real people who experience Celiac firsthand rather than just read a list of symptoms that people may or may not have. 

I'll preface this by stating that I am also lactose intolerant, and that gluten is in many items that I consume regularly. So it is difficult for me to differentiate what food items are causing which symptoms. I am also on a new medication for reducing hair loss, and I have no idea if any of these symptoms could be related to that, but I highly doubt it. 

1. I use the bathroom two, if not three, times a day for bathroom issues, and feel consistently nauseated, bloated, gassy. I wake up in the morning with a nauseated stomach, and have bathroom issues. Then, I feel the same way after eating lunch, and use the bathroom another two or three times over the course of the day. This has been the case for me for as long as I can remember, though my whole life other people have told me that the average person only defecates once every two or three days. My stomach is constantly in knots, and it does not take a large quantity of food to make me feel sick. I especially feel sick after dairy, cereal, chips/crackers, though I feel sick about one hour after most meals. My stools are very foul smelling as well, and I have frequent diarrhea, gas, bloating. These symptoms have been present for much of my life.

I also often feel as if my food is going to come back up and I feel as if I need to throw up, but it never happens. It is like I feel the food come back up but it then goes back down, and I never feel like I am actually GOING TO throw up. 

2. My breath, the aftertaste in my mouth, and the air coming out of my nose smells/tastes like smoke. This has not always been the case, but has begun recently. I don't mean cigarette smoke, but something akin to the smell of burning wood/campfire/Duraflame logs. This happens mostly after eating chips, cereal, fries, muffins, donuts, etc. I ate Cheerios today and this taste has been lingering in my mouth and on my breath. This is the symptom that in particular makes me concerned about Celiac, because I know someone with the disease whose sweat, breath, and general body odor has this same "smoky" smell if they consume certain foods, only theirs is very strong -- I have also read posts on this very forum that a minority of people experience this. I am the only one who can smell this on myself right now, thankfully, and it is not coming through my pores or sweat, just my breath. It is clearly from a digestion issue. I cannot think of what else might be causing this. 

3. General feeling of tiredness, restlessness, malaise, and exhaustion. I have a lack of energy altogether and find myself very tired and exhausted on a regular basis. This one I could assume is due to my medication, as it affects hormone levels, but that is only my guess. 

I am also considering that these symptoms could be due to lactose intolerance, poor diet, and just a general bad stomach and might not be Celiac, but is it worth it for me to get tested? 

If anyone has any information that is helpful I would greatly appreciate it. 

Hi!

I have a lot of the same symptoms. I have had lactose intolerance when I was younger but “grew out of it.” I think this could also be contributing to my stomach issues because I don’t think I grew out of it. 

I have experienced pretty bad body odor, but not really breath odor. Mine isn’t smoky, as much as it is described as like stool. Who knows why this is. 

Mom currently on an elimination diet, because my endoscopy for celiac was negative. I’m already starting to feel better, but no body odor change yet. 

You should go to your general doctors for an appointment and tell them all of your symptoms. This way they can test for many issues rather than just visiting with a specialized doc and being told you are normal. 

On 4/3/2018 at 5:25 PM, ravenwoodglass said:

Positive blood trumps negative biopsy. Go ahead and do the diet strictly. The elimination diet may be helpful in picking up any other intolerances you may have but be aware that some of those may resolve in time as you heal. Hope you are feeling better soon.

Thank you! So are blood test more accurate than an endoscopy? I know the endoscopy is the golden standard for diagnosing celiac but I’ve heard of the opposite. 

On 4/3/2018 at 5:59 PM, cyclinglady said:

Celiac disease can create patchy damaged areas of the small intestine that can be missed or you might just be starting to develop celiac disease.  Your GI was wise to refer you to a skilled dietitian who can help you master the gluten free diet.  In a month or so, you should see some improvement (even slight) that will let you know that you are doing the right thing. In six months, ask for a repeat celiac antibodies panel to see if your results are lower (improving).  

Open Original Shared Link

Welcome to the forum!  

Thank you! But I was under the impression that the antibodies are only present when the body is fighting off the gluten? So that would mean that eating a gluten free diet while getting a gluten antibody blood test would be innacurate. Maybe I misunderstood what you’re saying.

1 hour ago, kareng said:

Why were you put on this?  Did you get tested for Celiac first?

Yes, I had blood tests done in November 2017 due to strange symptoms and had positive IGA antibodies. Underwent an endoscopy and it was negative. To now where I’m visiting a dietician 

1 hour ago, Ennis_TX said:

First...if celiac is the suspected culprit you need to be eating gluten and get tested first please refer to the following before proceeding with your current diet.
Open Original Shared Link
Second yes, diets for finding food allergies generally involve removing all but 3-6 foods and eating only those and removing 1 and moving in another for a week at a time recording symptoms. SIBO diets require low carb and fructan free menus, Candida treating diets are similar, there is the antihistamine diet, and the low tanin diet, FODMAP Diet, and I personally follow a Keto/paleo diet minus the meat, with just eggs.   Egg whites are histamine liberator and are normally removed in allergy related diets.

Yes, in previous posts I explained that I was suspected celiac because of positive Iga blood work but had a negative endoscopy. 

Hi,

I visited a dietician on Friday 3/30. She told me to follow a gluten free, dairy free, sugar free, no red meat, eggs, soy, peanuts or pistachios. So far it hasn’t been too hard (I started on Saturday 3/31). I am wondering if anyone has followed an elimination diet that’s similar. I have to follow the diet for a month, then go in for a reassessment. How long has it taken any of you to notice symptom relief? I think I was put on a more strict diet than other people with the same issues because I had allergies as a toddler and baby. I’m also wondering about gluten free snacks. Are things like gluten free chips, crackers, etc bad for you to eat? I have definitely been eating healthier and increasing my veggie and fruit intake. Any suggestions for snacks/recipes on this diet?

Hi,

I have undergone an endoscopy and was found that I do not have celiac.

However, I had positive marker (IGG) and vitamin d deficiency tests. 

I am wondering if anyone has ever done a 23andme test and if they are a good idea

I really want to cut gluten out of my diet already, since I have many horrible symptoms (including fecal BO) and want to try to relieve them

But I have an appointment with a (sorta) wholistic dietician— not for another 5 weeks (hopefully she is good considering 6 weeks earliest to get an appointment) 

My mom’s friend has ibs problems too, and she is currently going to the same dietician and is on this weird elimination diet (no dairy, gluten, and some enzyme that’s in a lot of foods)

My dermatologist is gluten intolerant and she went to the same dietician and was diagnosed through the elimination diet and hasn’t eaten gluten in 3 years

I do have a lot of things in place to get back to normal health, but I am really impatient 

Has anyone ever done an elimination diet similar to the one I will most likely have to do? It seems like I may have to do it but not positive 

And has anyone had experience with  fecal BO related to gluten?

Still not diagnosis of gluten problems and I am very anxious that the diet won’t releive symptoms and I will have to deal with all of these symptoms for much longer than I want to to get a diagnosis of anything

Any experience with any of the above ?

My doctor called today to say the biopsy and endoscopy were normal. They want me to do laxatives for another month and come back in to see if symptoms are better. I really don’t think that’s going to help though. Any suggestions or tips?

21 hours ago, cyclinglady said:

Welcome! 

I think you are going to have to wait for the endoscopy results (are you sure you are scheduled for an endoscopy and not a colonoscopy?). 

As far as your celiac antibodies tests, who knows?  Just saying that your IGA was positive does not reveal anything as this test can be just an Immunoglobulin A test used as a control test in celiac disease testing.  As a stand alone test, this measures an immune response.  Get copies of your labs and post the results if possible or research and learn the difference.   Elevations of the celiac panel can be attributed to other illnesses like Lyme or Crohn’s Disease.  Those should be ruled out.  If you are IGA deficient that can impact your antibodies tests.  Some celiacs are seronegative too.  

The BO?  I can not say.  Of course, during celiac disease testing, you need to be on a full gluten diet, but consider adding lots of veggies to your diet, cut sugary foods/drinks, and stay hydrated. This might help and it certainly can not hurt for anyone to cut down on sugar and increase veggies!  

I applaud your initiative to solve your medical mystery, but try working with your Mom, doctors and other trusted adults to help you and be wary of reaching out in the internet.  Be careful!  

Signed,

Concerned Mom with a teenager

Yes, I will have an upper endoscopy done 

18 hours ago, Jmg said:

Welcome

I think the GI was an idiot to talk down to you both, sadly some doctors don't have the best bedside manner. The best advice I can give is to try and get as much from them as possible but beyond a certain point you've done the right thing in seeking a second opinion. 

Quick google showsOpen Original Shared Link after removing gluten, so you may be on the right track. It's important you don't remove it yet though whilst the testing is still ongoing. One thing I would say is that if celiac is finally excluded, don't be afraid to try the gluten free diet REGARDLESS, it may help in resolving your symptoms and that's the main thing. My test was negative but going gluten free resolved a load of symptoms, some of which I didn't even realise were symptoms...

As for the 2 conflicting tests, they may have been testing for different antibodies or there may be 2 differing results simply from differences in your immune response at that point. Its not an exact science and many members here have tested negative then positive later etc. Stick with it and hopefully you'll get some answers soon.

Wishing you the best of luck,

Matt

 

Thanks so much!

Hi everyone! I am new to this site and celiac in general. I’m in the process of tests and diagnosis of celiac. I have to be treated by a pediatric GI. I was referred from a regular nurse at my doctors office to visit a GI. I had blood work done at my regular physician that tested me positive for an antibody of celiac (I believe IGA). When my mom and I visited the pediatric GI the doctor recommended, he really talked down to my mom and me and didn’t even let me finish talking before he just put me in the books for an endoscopy. So, we went to another GI the next day and had more blood work, stomach X Ray, rectile and stomach exam, etc. When the blood work came back from that GI, I tested negatively for all of the antibodies. (Weird). After my X Ray, the GI said that my stomach was full of poo and prescribed laxatives (mirolax, after initial cleanout 1 capful 2 times a day to keep up) for 6 weeks after 2 day cleanout. After the rectile exam, I was told I have a fissure and was given medicine for that. The laxatives did make me go to the bathroom, but not as much as I anticipated and I didn’t feel any relief. After halfway through the 6 week period, my mom called the GI and told him that I wasn’t feeling relief. They told me to take 1 pink dulcolax a day as well as the mirolax. I still wasn’t having a change in symptoms. The medicine for my fissure has helped. Two days ago, we went in for the check up after the laxatives. I told the nurse I wasn’t experiencing relief. She did an X ray of my stomach again, and surprisingly my stomach was pretty much emptied of constipation. She ended up saying that I’m going to need an endoscopy done. She also prescribed a medicine for acid reflux, because I have had it noticably one time, and she wants to see if I see any relief from the medicine that would indicate that I do get it regularly, because apparently tooth enamel problems can be from acid reflux  

My symptoms include:

Fecal BO, however my mom doesn’t think I have this, but everyone around me at school including friends are always covering their noses, sniffing, etc. I’ve even noticed my siblings and mom doing this, so maybe my mom doesn’t want me to be worried about this. I didn’t tell my doctor I think I have this BO, because I can’t smell it as much as other people, and honestly I was too embarrassed to say it. Other symptoms are tired, dizzy, brain fog, fatigue, nauseou, sometimes stomach pain, constipation and diarrhea, VERY bad sweats and always feeling hot, sometimes cold chills. I also have a vitamin D deficiency and take vitamin D tablets everyday. When I’m not on the supplement, I never remember my dreams. Before I was tested with a vitamin D deficiency I would remember my dreams a few times every year, and now it’s a few every week. I also had very bad eczema as a baby, and had very bad allergies. I had to get a full allergy panel done and was allergic to lactose, some nuts, one type of meat I don’t remember, citrus fruits etc, but no gluten. My mom and I think I’ve had celiac/gluten problems since I was a baby. I’ve also had tooth enamel erosion problems since I was little, and have composite on all of my teeth. I also get headaches and sinus pressure, and I am probably forgetting even more symptoms.

I also have two aunts on different sides with uncured GI problems. My uncle had GERD as a kid. My half sister also has celiac problems, and had a colonoscopy and endoscopy, but no one thought to tell her to eat gluten during the testing period and she was eating gluten free (dumb, right?)

Any thoughts on the BO, why one blood text wasn’t positive and one negative, etc?