leadmeastray88

I was wondering how many people actually use gluten free makeup and shampoo and creams, etc. Is it really common for a person who is gluten-sensitive to have a reaction to products containing gluten?

And - can you have a reaction to it by absorbing it through your skin, or do you have to actually ingest it??

Thanks!!

Wow...I am so sorry you are having so many health problems! I am also a 19 year old female and I can understand (and sympathize) with the frustration you must feel.

The only thing I can say now is that you're obviously having this gut feeling about it not being Celiacs. Usually, your gut is right. I think you should really try and insist the testing to your doc because if you go on the gluten free diet, you might start doubting yourself and wonder if that really is the cause to all your problems. I mean, nothing is keeping you from starting the diet once the testing is over, just to give it a shot. Atleast you can tell yourself that you've done everything possible to get a proper diagnosis.

As for me, my doctor refused, and I mean refused to scope me because I've had 7 surgeries in the past 2 years and didn't want to put me through that added stress. Getting into another GI would take atleast 6 months for me and I couldn't wait that long. I opted for Enterolab, where they do stool testing to test for gluten sensitivity and many other sensitivities. You could do that too!

In any case, I hope you find your answers soon. Make your doctors do what you want - they work for you! Take care!

Hi there!

First off, you haven't really been diagnosed. A diagnosis requires a positive blood test, a positive upper endoscopy that shows blunted villi in your intestine, and for some doctors, a positive dietary response. Just because your gyne said 'try the gluten free diet', doesn't mean you have Celiacs!

Secondly, if you decide that you want to be tested you can't be on the gluten-free diet, or the results will be inaccurate.

Glad thats out of the way

Now for your symptoms...

Blood in your stool is NOT normal, whether its Celiac's or not. Did your gastro say anything about internal hemorrhoids? Those can cause blood in the stool intermittently, sometimes in large amounts. Are your BMs normal?

Localised pain is not uncommon. Many people who have Celiacs have been diagnosed with fibromyalgia first.

Stomach pain can definitely be attributed to Celiac. Is it cramping or nausea or indigestion? All of the above? The problem is that most gastro symptoms can indicate a wide range of different ailments.

And Yes - the disease can come on suddenly. Some people are diagnosed as children but many, many people here have had a 'trigger' set off theirs: stress, surgery, pregnancy, etc.

I wouldn't recommend going on the gluten free diet until you get tested. Otherwise, you may question yourself and end up putting yourself back on gluten anyway. Even then, you can't be sure the results will be accurate because you may have healed by then.

Feel free to ask lots of questions!!!

-Kim

I am thinking about trying the diet for a week to see what happens. Is that long enough to feel a difference?

No, it's not.

I'll have been on the diet for 2 weeks next Tuesday and I am actually feeling the same, if not a little worse. The only reason I did this was because my surgeon REFUSED to scope me!

If you can stand to wait for the biopsy then you should! You can't get it if you're gluten free because then you risk getting a false negative.

Hello to all! First of all I want to say that this is a really great board with lots of excellent info! I just got my blood work back and it was negative with very low numbers. I had really thought I was on to something and now I am disappointed that I don't have an answer. I just don't think I have the willpower to try the gluten-free diet and stick to it without a definitive diagnosis. One question did come to mind when I thought about what might alter my test results. I take Plaquenil 400 mg. and Prednisone 5 mg. every day. Would this have a bearing on the results? I take these meds for Lupus and Sjogren's Syndrome and I also have Hashimoto's Thyroiditis and an everpresent itchy rash (which was biopsied previously and negative for DH). My symptoms are as follows: chronic constipation, severe bloating and abdominal distention, frequent gas, fatigue, gum disease, osteopenia, GERD and post-nasal drip. I have had these symptoms for a while, but they got a lot worse after the birth of my son 2 years ago. If anyone has any insights for me, all comments would be appreciated. Thanks for reading my story!

Hi there!

First off, I'll mention that my story is a lot like yours. I also thought I was on to something since I haven't been feeling well following a traumatic abdominal surgery 2 years ago, and like you, I had negative bloodwork as well.

Once you've been here awhile ypu'll notice that many people who get diagnosed with Celiac have negative bloodwork, and then have a positive biopsy. What blood tests did you get done? If you only got IgA, they could be inconclusive because about 30% of Celiacs are IgA deficient, and therefore you'd need a total IgA serum panel done instead. I, however, have an ignorant surgeon who refused to do any further testing and said "I'm too young for scopes", so I'm trying the gluten free diet right now.

I also notice you have other autoimmune diseases. Having one autoimmune disease predisposes you to another, I'm sure you're aware.

Many of your symptoms could definitely be attributed to Celiac, however the problem is they are also attributed to other gastro conditions.

I encourage you to keep digging though - and don't give up. If you want answers, you need to demand that blood test and/or a scope, but you need to be eating gluten.

Hope this helps, hang in there!

-Kim

Hi!

My blood tested highly positive for celiacs (IgG and IgA anti-transglutimase) so I went in to have an EGD and biopsy this morning. The GI told me that there were no visual signs of celiac disease and that everything looked healthy. He said that the biopsies would be more accurate though. Did any of you have this happen? Is it less likely that I have celiacs? Because that would be great!

Anyway, now he wants to do a colonscopy to check for a variety of colon issues that may be causing my diarrhea. I'd like to slow down a little bit and get this out of the way first. ...And I don't want to have a colonscopy.

I also have type 1 diabetes, if that information is useful.

Thanks in advance!

Hi there,

First off, it is highly unlikely that you don't have Celiac disease - the bloodwork is very definitive when it is positive - there are almost never false positives.

The damage in your intestine can't always be seen with the naked eye. Wait and see what they say once they take a closer look at the biopsy. You can also have elevated levels of IgA and IgG but have no visible damage to the intestine - many people here have had this happened to them.

Also, the fact that you have type 1 diabetes raises a huge red flag - many people with type 1 diabetes also have Celiac.

Either way, I would say that you most probably have Celiac. I'm sure others here would agree. This forum is an amazing support system as well as a valuable resource.

Welcome to the board!

and P.S...if it is Celiac, you're lucky it didn't take you longer to figure it out - it takes, on average, 11 years to get diagnosed. So don't be too down on yourself!

My doctor told me she thinks I have Celiac a little over two weeks ago, so I started a strict gluten/dairy-free diet. My symptoms were severe bloating, continual burping, and a fermentation in the stomach. Immediately after I started the diet, my symptoms improved dramatically. I was feeling really good about the gluten-free diet and thought that I had finally figured out what was wrong. But about a week and a half after starting the diet, my symptoms returned as bad as ever and have occurred the past two days. I haven't changed my diet, and as far as I am aware, I haven't been eating any gluten. Is this normal? Did anyone experience anything similar to this when first starting a gluten-free diet?

I am in the exact same boat as you as we speak. I started a thread like this in the 'Coping' section.

The first few days I felt great - now it's just a little over a week since I started and I feel terrible. I'm starting to second guess myself but everyone here has been telling me to keep with it so I'm trying! I'm anxious to get the tests from Enterolab too and that's not helping

Hang in there! It gets better!

Did your doctor order the lab from EnteroLab or did you do this personally for yourself? My daughter had a negative blood test too and I am trying to decide if I need to take the panel as well. My ND suggested it. What are you looking for? Can EnteroLab diagnosed Celiac or does it just "gluten sensativity"? Guess I am trying to figure out if it will be helpful even though I know she can't eat gluten.

I ordered the tests from Enterolab myself, because my surgeon refused to scope me and I'm sick and tired of waiting around. I don't want to wait another 6 months to get into a gastro when these tests take 3 weeks to get back.

I ordered the gluten sensitivity stool panel, the gluten sensitivity/celiac gene panel, the milk sensitivity panel and the malabsorption panel.

To me, a diagnosis of celiac isn't necessary - as long as I know I'm sensitive to gluten - the treatment is the same either way

I had aweful withdrawls. I wanted to punch anyone who looked at me! And I am so not violent! I stayed inside my apartment for like 2 weeks! lol!

I am completely off Dairy and Soy. I just deal with it (I use coconut milk now and love it) I use coconut oil in recipes instead of butter.

Also I didn't ever feel completely good (without having 'd') until I cut out Nighshades and Soy Lecithin.

You'll do it all in your own time. I needed time to mourn over salsa and pasta sauce

I would be lying if I said I didn't miss Chipotle and Chilis. You get used to it though and once you stop feeling like crap it will all be worth it....

like curry?

Hang in there...you are worth it!

sickchick

That's so nice, thank you for the encouragement

It has been very frustrating lately - I can't even describe it. And my lab hasn't arrived from Enterolab yet which is making me very anxious! Hopefully in the next couple weeks I'll have some answers.

Yes, many of us go through the gluten "withdrawal"-- check out some of these threads that others have shared on this...

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I've only been gluten-free 3 weeks and am thinking about tracking what I eat to try to trigger what makes me feel worse, so you may want to try that---other food sensitivies seem to appear once you go gluten-free, it seems. For example, I was never lactose intolerant but am terribly so right now since I went off the gluten, but folks on here say that this is sometimes just a temporary reaction. You may also feel worse after ingesting soy, I'm told, and may also be reacting from less yeast.

Thank you for those links to those other threads - I know the questions around here can get somewhat repetitive, so I apologize

A food diary - that sounds like a good idea! I think I'll try that.

Thank you both for your responses.

Its been exactly a week today that I started gluten free, and while I felt great in the beginning, I felt terrible last night and feel terrible again today. I have bad stomach aches and cramping again.

I'm trying to be as careful as I can with cc as I am living with my family who is not gluten free, and am sticking to simple foods, as well as cutting our dairy and soy for now.

Did you guys feel terrible too at first, post-gluten free?

I have been diagnosed for two years and have been on a "gluten free" diet. But my issue is really cross contamination.

I have a family and my job requires me to purchase catering I don't live in a cave and even though I eat gluten free I am having issues with bloating, diarrhea, joint pains, and weight gain.

I have been to specialists, doctors and dieticians. It is my understanding even if you get a little gluten then you can still have the side effects.

So I am just in a quandary of what to do. I just want to give up!

Don't give up!

I, like you, am still living with my family and have recently started a gluten free diet. I am the only one in my house who is eating gluten free and although I have an extremely supportive mother who has been nothing short of extraordinary through this whole thing, the fact is, food that contains gluten is still being prepared in the same pots/pans/colanders with spoons/spatulas etc. I realize how important it is to avoid cc but when you're a university student like me and the spending cash is low, the last thing you want to do is ask your mother to replace everything she has in the kitchen. I know she's trying and she's been doing an awesome job but its a learning process for all of us, not just me. Just know you're not alone!

Also make sure you're not getting hidden gluten from any products other than food - toothpaste, shampoo, cosmetics (wasn't sure if you're female or not) They have an amazing line of cosmetics at afterglow.com that are all gluten free!

I know this was probably not much help, but maybe try and talk to your family about the importance of cc and the effects it has on you. I hope you feel better soon. Take care, and good luck!

-Kim

Mine took about a week to return the Celiac test, 2 days for the rest.

You'll probably get them by today or tomorrow. I know its hard to be patient Good luck!

Hi, everyone. I'm a 24 year old female who has been diagnosed with GERD and possible IBS. For over a year, I've been experiencing bowel problems including chronic constipation, pain while passing stool, and stools that contain bright red blood and mucus. I sometimes have gas and bloating, and once in a while small pieces of my stool float in the toilet (sorry for the graphic info!) This all started after I took a course of heavy antibiotics (Flagell) to treat an unrelated infection. I was tested for C. Diff. and had a colonoscopy when my symptoms began. Both tests came back normal, and my GI specialist concluded I had internal hemmoroids and told me to take fiber. Despite the fiber, my symptoms have persisted, and my GI doc. concluded I may have IBS. To complicate the picture, I've had epigastric pain, nausea, occasional vomiting, painful swallowing, and a sore throat for over six months now. I had an abdominal ultrasound as well as an upper GI endoscopy, both of which were normal. My GI specialist told me I have GERD, and I've been taking Prilosec twice a day. I'm very slim, I exercise, don't drink alcohol or much caffeine, don't smoke, and have been eating a low fat diet and avoiding foods that might exacerbate my symptoms. Yet, I still have almost daily symptoms, especially at night. I've read a little bit about celiac disease, and I was wondering if my symptoms might not be attributable to GERD/IBS after all. Is it possible I might have celiac disease? Any thoughts? Thanks so much in advance!

Maggie

Hi there

Your symptoms could definitely be attributed to Celiac, which is one reason why its so hard to diagnose. The symptoms can be very similar to IBS/Colitis/Chrons/GERD, or some people have no symptoms at all. I, like you, have constipation instead of the 'classic' symptom of diarrhea. There really are no 'classic symptoms' anymore.

WHat you're experiencing is obviously not normal. You should go to your GI and ask for a complete celiac panel (bloodwork) and then an upper endoscopy, no matter what the bloodowork says! This is especially important because there are many people here who have had false negative bloodwork yet have a positive biopsy and vice versa. Let us know how you do and good luck!

-Kim

My test kit arrived in 2-3 days... really quick.

Thank you - thats what I was really looking for

Hi there!

I myself have never had the endoscopy, not yet anyway.

Here's the thing about blood tests and biopsies:

Blood tests can have false negatives, but NO false positives. The reason being is that some Celiacs don't produce IgA antibodies, and are therefore IgA deficient. These antibodies also won't show up in the bloodstream if there isn't significant damage done to your intestines.

Biopsies are hit-and-miss. Who's to say your gastro will biopsy a damaged part of your intestine? Many people here get positive blood tests and negative biopsies, and vice versa. I personally don't believe the biopsy is necessary when your bloodwork was conclusive.

Some doctors believe that a biopsy is necessary for diagnosis, however. It's really your call. How badly do you want a diagnosis? You can always try the diet anyway, there's no harm in that, and if it works for you, then you have your answer.

Hope that helps! This forum is an amazing support group. You should come here often!

-Kim

I don't know about Canada delivery times, but when I just did my testing with Enterolab it took exactly 3 weeks from the day they recieved my box to the day they e-mailed results to me.

Okay thanks! Thats what they said on the site.

What about how long it took for the tests to get to you after your ordered them? Anyone?

We suspect Celiac with our Dd. I removed gluten from her diet before I know I shouldn't because of testing. She improved so much, so that was my answer. I am still curious to know what a genetic test would reveal. She's been gluten free since Feb. and doesn't have a ped. appt. until September. What test should I ask for that she doesn't need to be glutened for? Will it be accurate if she's gluten-free? I would assume it would be. I heard something about a cheek swab? Please excuse my ignorance, I am trying to become more informed-swimming through all of the info. here and elsewhere. Thank you for any help.

Hi there!

Try Enterolab! www.enterolab.com

They do the gluten sensitivity and gene testing through stools and cheek swabs. I just ordered yesterday! *Note that they test for gluten sensitivity, NOT Celiac! They can't diagnose if you have Celiac's, just if you have a sensitivity. But what's the difference - the treatment is the same anyway.

The best part is - you don't have to be eating gluten to take them! Lots of people here have used this lab, and some come out positive and some negative, so no reason to be sceptical. In the end, if her life has dramatically improved on the diet then that is answer enough. Some people never get a diagnosis but feel much butter on the diet.

Hope this helps, and good luck!

Hi guys,

I placed an order last night for Enterolab's complete gluten sensitivity/gene panel with milk sensitivity included.

I live in Canada, and I was just wondering how long it took for the tests to be sent to you? A couple days? A week?

Also, they say they'll email you the results in 3 weeks - is that how long it took to get your results?

I started gluten free yesterday, and although I know they say you don't need to be eating gluten to get accurate results for the stool tests, I would rather it be close to when I last ate it just to be on the safe side.

Thanks to anyone who responds!

A few weeks ago I had some testing done to check for parasites, as my surgeon said he'd like to rule that out before we talk scopes. I thought that was fair, so I did the testing. I got my results yesterday - they were negative for parasites.

I was relieved and was looking forward to talking scopes, when he told me "I think you have IBS. You're too young for me to be sticking telescopes in you. Plus, you've been through enough already this past year." He wrote me a prescription and told me to come back in a month.

I pretty much left there in tears. I know you'll all say I should have spoken up and demanded a scope. However, we have been very close over the past year because he cured my hernia problems that were caused bya birth defect which was ruining my life. I have so much respect for this guy, it's not even funny. But I'm sick of waiting, I'm sick of being sick. A month is a long time, I'm sure most of you can relate.

When I got home I talked to my mom, who was also shocked that he didn't suggest more testing for gastro issues or food intolerances etc etc. My mom said I should try the gluten free diet anyway. My grandma was also there and she argued that I should just take the pills and see him in a month. My grandma also said "well if the pills help then problem solved!" All I was thinking was 'No..problem not solved. I'd be on pills for the rest of my life - I'm 19!' I couldn't believe how emotional I was getting over this. I think it's more frustration than anything.

So today is my first day gluten free.

I kind of wanted a diagnosis for the same reason anyone does - just to have peace of mind, to know it's not all going to be for nothing, to make everyone else around you take it seriously... but I've realized that its really only me who needs to take it seriously, not everyone else. Maybe I'll give Enterolab a try.

I just wanted to thank all the people here (and I'm sure they know who they are) who have helped me cope with this and have been so encouraging not only to me but to everyone here.

Kim

When I went to get my blood tested for Celiac's about a month ago, they only took 1 vial and the results were negative. I have no idea which antibody they tested for, all they said was that it was negative.

Is 1 vial enough to cover all the antibody bases associated with Celiac's? Could someone tell me exactly what to ask for to do a 'complete' Celiac panel?

Bear with me, I completely don't understand all the different antibodies and such that they look for.

Any help is greatly appreciated!

Kim

I was hoping someone who has Celiac would chime in by now..

I myself am still going through the diagnosis process, but from everything I've learned thus far is that there are false negative blood tests, but no false positives. Therefore, if your blood test is positive then you most definitely have Celiac's, you can rest assured!

The problem with the biopsy is that you will have been on a gluten-free diet for months, which gives your villi time to heal. 2 months of eating gluten may not be enough to damage your villi enough again to get a positive biopsy result. The biopsies in themselves can also be inaccurate, because they might not take a sample of your intestine that is damaged, so its really hit and miss.

Either way, you have positive blood results which means a biopsy really isn't all that necessary for a diagnosis, but it'[s good to get one after being gluten free to see if it's working.

Hope that helps, and good luck!

Kim

Wow, thank you both for your prompt replies and helpfulness!

leadmeastray - Thanks for the encouragement. How did your friend end up knowing they had Celiac? Did they eventually get a positive diagnosis?

It appears that I just may have not given the gluten free diet for long enough. I think that I should eliminate dairy and soy completely as well, because I have tended to feel bad and sick to my stomach after eating cheeses, ice cream, etc.

I can empathize with you as well - being a student, and now that I am finished bar one summer course, starting my career, is quite a challenge while struggling with health. The difficulty that I face in concentrating on the things that I need or want to these days has become quite frustrating and discouraging. My thoughts feel disconnected.

You're welcome

She ended up having a positive biopsy when she was 11 and positive reaction to the gluten free diet. She also has Type 1 diabetes, which she was diagnosed with when she was 2. I am also contemplating being tested for diabetes.

Yes, removing soy and dairy from your diet at first would be smart, as you need to give you villi a chance to heal. You can always re-introduce them later (unless you find out you are also dairy/soy intolerant, which many people here are as well)

Yes we are very similar, you and I I am in the exact same boat as you and it has been quite a bumpy ride so far. Even the most simple tasks are exhausting and I feel like I'm 'not all there', if you know what I mean. I guess the term would be 'brain fog..' I guess I'll have to see where to go from here.

In any case, you've stumbled upon an awesome support group. There are great people here who have helped me immensely, and I hope you find all the answers you are looking for!

(hugs)

I'm sorry was my post too long?, am I posting too much? I thought I could come here for questions and advice while I am going through this roller coaster of getting a diagnosis. Sorry if I'm invading the board.

No not at all!!

She was just giving refernce to your previous post so people who didn't see it can catch up

No worries!!

First of all, welcome to the board.

I myself have not been here long but have learned more in the past 3 weeks than over the past 4 years.

All I keep reading is how blood tests and endoscopies for Celiac are highly inaccurate, because they are both hit and miss. My friend who has Celiac had negative bloodwork and positive endoscopy, and there are members here who had negative bloodwork and negative endoscopy, but their lives have improved a great deal since going on the gluten free diet. I'm sure they'll chime in soon

The bottom line is: the diet is the best test.

If it makes you feel sick, don't eat it. Since your tests were all negative, try the diet for a few months and see how you feel. That's how long it can take to get feeling better. You may want to eliminate dairy and soy too until your stomach is healed.

If you want to know if you're gluten intolerant, try the Enterolab testing. They don't diagnose Celiac but they do stool testing to see if you carry the Celiac genes.

I completely empathize with you on how hard it is to come to a diagnosis. I too have been struggling with my health and am trying to find clarity and peace of mind (while being a full-time university student!)

Hang in there, and good luck!

Kim