• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

New Here And Very Frustrated!

Rate this topic

Recommended Posts


I am new here too. I feel like I am going through the exact same thing as many of you. I am really glad I found this board. It's nice to "meet" all of you! :D

I just got my test results and they were "normal". Here's what they are:

Tissue Transglutaminase Ab was 7.0 (<20 negative)

Anti Gliadin Ab IgG 18.9 (<20 negative)

Anti Gliadin Ab IgA 11.3 (<20 negative)

Although the lab they use not very good in my opinion (Here in NH). I see a rheumatologist at Lahey in MA and they see things that my doc up here doesn't see test wise.

I have weakness, fatigue, hair loss with a psoriasis-like rash, headaches, white areas and ridges on fingernails, blurry vision, major brain fog, muscle aches, stiffness, bruise easily and more. I don't have many gastro symptoms. I am usually constipated. I only get diarrhea every now and then but when I do it just hits all of a sudden - usually when I'm shopping of course! <_<

I have other health issues. I have autoimmune thyroid (Hashimoto's) and take Levoxyl for that. I also may have Lupus or Sjogren's (have the antibodies but not diagnosed yet) and am taking Plaquenil (hydroxychloraquine) for that. I have pcos, endometriosis, hypoglycemia from too much insulin in my body, went through 6+ years of infertility and at least 2 miscarriages. (I finally had a beautiful baby boy in 2002!) I did end up with HELLP syndrome which I hear can go along with celiac. I was induced 2 weeks early and I believe I may have had gestational diabetes because my son was 8 lbs. 5.5 oz 2 weeks early.

I break out on petechiae every now and then (tiny blood spots under skin). Also, I had broken my leg a few years back rollerblading and the doc said it was strange that it happened. I had a bone scan a couple of years ago, and the tech told me it was borderline - yet my doc insists that it is normal!

Also, my niece is autistic, my sister and possibly my dad have Asperger's and I have ADD. You have probably heard the gluten connection with all of that! I have a toddler son and I am so worried about him!

I went gluten free on my 34th birthday just 3 days ago. I already feel a difference. My son and husband are going gluten free as well. My husband has IBS or something and he figured he'd try it. My son went from pooping 5x a day with soft or runny bowels to just once a day! He used to get awful diarrhea rashes. My husband also used to have BMs all of the time and he seems a little better.

This is only day 4 for us so we're still learning and testing. My husband and son are adapting well. I feel better somewhat already, but I am having some weird withdrawal symptoms. Also, I am really upset because I swear all of my docs think I'm nuts! It's a horrible feeling, but after going through so much stuff over the years, I tend to not trust my body one bit! My doctors will just do the test I ask for and then if it's normal they never try anything else. I feel like I have to bug them to get them to do anything. The only way I have found out about my problems above is through researching on my own - and of course they hate that. God forbid I try to self-diagnose. ;)

I have some questions for you all. I hope you can help me understand a few things. I'd super appreciate it!

1. Do you think the lupus meds I'm taking could have skewed my results since lupus is also autoimmune?

2. 2 days after going gluten free I had some weird symptoms. I feel almost like I have the chills. The best way to describe it is that hot/cold feeling you get when you put Ben Gay or Icy Hot on your skin. Also, my eyes have been dry and scratchy and a little crusty when I wake up (I know - yuck!).

3. We've been enjoying corn pasta, but I notice my stomach goes a little crazy after eating it. Should I not eat it for a while and try again? Maybe do rice pasta instead? (Haven't tried it yet and hoping it's not sour like the bread!)

4. Got any good bread suggestions? The rice bread is okay but I'd like something less sour.

5. Do you think I should make an appt. for a gastro down at Lahey and try again? Or should I just use enterolab? (Not sure I can afford that!)

Thanks so much in advance for your answers!!! I love this board. I am learning so much! I'm sure I'll have more things to ask. I'll try not to be too annoying. :P


Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

Hi Chrissy.

The only sure fire way to diagnose celiac disease is with a biopsy, which I would strongly recommend you (and your family) have done before you go on the gluten-free diet. I would recommend you all see a gastroenterologist -- it's well worth the money and time. Columbia University has a celiac center -- I know that's a bit far but at least you'll be dealing with experts in the disease.

I am not a doctor. I have had celiac disease 5 years, my sister has had it her whole life and 3 of her kids have it. It would be a shame to be on the gluten-free diet if you didn't have to be. If you do, then there are worse things, but at least you'll know.

As for the bread, kinnikinnick makes a very good ready-made bread (www.kinnikinnick.com) -- it's the only ready-made bread I'll eat.

Unfortunately, I have to run, but I'd be happy to answer any other questions. Good luck.


Share this post

Link to post
Share on other sites


Thanks so much for replying! I am going to try that bread. I went on their web site and found some stores that carry their bread. The closest store is about an hour away, but I'm willing to travel! Then afterward maybe I'll order online.

I have an appt. the see a gastro at Lahey, but not until April - and then who knows when I could get the biopsy. I don't think I want to go back on gluten until then. If I can get a cancellation appt. then maybe that would work. The only thing is, when I am on gluten I get really bad brain fog - and I am a realtor, so brain fog is not a good thing when you're dealing with people and contracts and appointments.

I may do the Entero Lab tests - I'm not sure. Do I really need a positive test? I mean, if my doc likely won't accept the Entero Lab test results, and I know my son and I feel better on the diet - what's the point? I'm so tired of my docs just appeasing me with the tests I request, and then not trying to go any further to see what is wrong! But it seems like almost everyone here has that story. :rolleyes:

Thanks again for your post and advice on bread. I'll try it!


Share this post

Link to post
Share on other sites


I'm new to this also but I have picked up a few things over the past 3-4 months.

1 When I went gluten-free I felt worse for the first 2 weeks-Flu like symptoms-aching in all my joints on my right side only :huh: -Lot's of weird stuff was going on. When I accidentally eat Gluten I go trough this same patteren.

2 Along with Foods that contain Gluten there are many Gluten Free Foods that I can no longer tolerate after being very sick-Chicken Rice Soy Dairy Oranges-The only real starch I'm left with is Sweet Potatoes.

3 Gluten Free Breads all bother me BAD! Must be Rice Bran, Soy and Rice Flour. Along with maybe the Yeast.

4 I had Numbness (that ben gay feeling) in both my hands 6 months prior to being diagnosed with Celiac. I was told I had Tendonitis along with Cubital Tunnel Syndrome and the Doc told me that if I didn't get operated on I would lose use of my hands. I decided to give it a little time and then my GI symptoms went crazy and I lost to date 40lbs.After going gluten-free for 3 1/2 months my hands are starting to fell better. I still have the tendonitis but that I can live with.

5 I'm in NH also and as far as testing I go to Seacoast Gastro see Alan Ades MD.I like him and he is very aware of Celiac Disease and his office sends all test to a specific lab that specializes in celiac disease.I had +blood and +biopsy.

6 One other thing that I'm learning is that once I got the Celiac diagnoses I was on my own to some extent. The Doc office won't tell me what to eat and the Hospital Nutritionist gave a broad overview of celiac disease but that

Share this post

Link to post
Share on other sites


Thank you for the info! I live in the Seacoast area! In fact, I work in Hampton as a Realtor.

I think I'll make an appt. with your doctor. My husband and son and I all feel better gluten-free so far. In fact my husband and son ate stuff with gluten in it at a party yesterday and they both have terrible diarrhea today. I really think something is going on here. :unsure:

Anyway, thank for writing! I appreciate it! :)



Share this post

Link to post
Share on other sites
Ads by Google:

Hi Christine,

I have not been diagnosed with Celiac, just a possibility since my tests were inconclusive so I am by no means very knowledgable on this subject. I do know that I tried the Adkins diet for about a week and had the same flu like symptoms, chills and pain. I wonder if it is related to not enough carbs in the diet? Maybe try healthy carbs, I would think sweet potatoes would be very good and bananas. Just a thought.

I tried corn pasta and got sick on it. I think the corn was just too much for my stomach that is trying to heal. Seemed to be hard on the digestion, I would think rice pasta is easier on the tummy.

I am having the same response about diet as Steve. My doctor told me foods are triggers not causes. He is concerned with causes at this point. I wish I knew what to eat!

Hope this helps a little bit.


Share this post

Link to post
Share on other sites

Hi everyone,

When I first went gluten-free, I got worse instead of better. I think it is

your body reacting to not receiving gluten. They say your body

craves what it is allergic to. I have always craved soft white bread,

but that "craving" went away after a few weeks. After that you start

to recognize other foods that bother you, in my case it was eggs,

milk, cheese, and just lately tomatoes. These foods are all on "hold"

right now, I hope to add them later. Also, I read that if you have a rice allergy

it will cause chills, which I had at first, but I can tolerate rice now, except

that I ate enriched rice and got sick, but I later learned it is sometimes

is sprayed with barley. hope this helps...

Share this post

Link to post
Share on other sites

Thanks for all of the info everyone! You have all been very helpful. You know, it's weird... tonight my husband and I had pizza on rice crust. It tasted okay and all but now I have a strange feeling in my throat - like it's a little swollen and scratchy. I don't know if I'm coming down with something or if it was the pizza. I guess time will tell. I seem to tolerate the gluten-free breads okay. My favorite is the frozen rice & pecan bread that is at all of the supermarkets here (NH). It is so good toasted!

I have now been gluten-free for 9 days! I am noticing an improvement each day, especially in my muscle strength and energy. I hope it keeps up! I really do feel I have Celiac, and I feel that the medication I am on for lupus has squelched my antibodies - because that's what the meds does! I find it strange that my Anti Gliadin Ab IgG was 18.9 and positive is 20 or above. It is awfully close, and I bet if I weren't on the lupus medication it would be much higher. What a mess. ;)

My husband and son are both still gluten-free and doing great! My son has had normal BMs every day and he's gotten some great reports from school on his behavior - not that it was bad, but he's received extra kudos lately for following directions and stuff.

Thanks again everyone! I appreciate your kindness. :)


Share this post

Link to post
Share on other sites

Hi Christine :D

I'm a newbie, too...Welcome!

(by the way, I'm in Maine, so I guess we're neighbors)

I can't answer any of your questions yet because I have not been diagnosed - BUT something that you wrote interested me...

You said that you have petechiae - I have questions about this - I have tiny pinprick sized red spots all over my upper arms and I was told that it was just excess blood and nothing to worry about (I was told this years ago by my then doctor) - Is this a normal occurance? My dots are always popping up...what do yours look like? (size-wise and color-wise)...also - how close are these dots spaced together?? Are they clustered or spread out?

Thanks - sorry I couldn't answer any of your questions (yet) :)

Share this post

Link to post
Share on other sites

Hi Meenucat (neighbor!),

They are actually little blood spots and can mean that you have a low platelet count. Sometimes this can mean you have ITP which is Immune (or idiopathic) Thrombocytopenic Purpura or other autoimmune issues like lupus - but it can also be normal I'm told (but I'm not sure I believe that).

The spots are flat and under the skin. When you press something clear onto the skin (like a glass slide) the spots don't lighten. You can have one or two, or you can have hundreds. Mine show up on my shins and I've had them on my stomach area.

I hope that helps! Try looking up Immune Thrombocytopenic Purpura on the net.


Share this post

Link to post
Share on other sites

Ads by Google:

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • There was a study where they checked 2 weeks on a gluten-free diet , and antibodies were still going up .  The study wasn't about that, so I think that is why they didn't go any further.   So... looks like 2 months gluten free?  If we think that antibodies are still being made at least two weeks gluten free.... account for the fact that most people need a few weeks to actually figure out and eat gluten-free...I would say it was a bit soon to re- test antibodies.     Edit it to add- if you were tested sept 12 and ate gluten for 6 more weeks before going gluten-free - who knows how high it got.  Shame on your doctor for doing the re- test so soon and discouraging you!  
    • Your numbers should not be going up at all. You are getting gluten somewhere. Do you eat out? Have you read the Newbie 101 at the top of the coping section? That will help you to ferret out how you may be getting glutened. Do you have a gluten free household or is it a shared household? Do you read ingredient labels?
    • Thank you so much!!!! I have a severe allergy, I can not even walk through a grocery store without getting a migraine. I have always used dreft but now I know for a fact that it is safe.
    • I’m 62 and have just now been tested for Celiac.  My Titer was negative, I have zero IGa and too much IGg (16) which is an indicator of intolerance at the very least and may indicate the need for another endoscopy. He also tested for EPI (exocrine pancreatic insufficiency) which was negative.  I just had a colonoscopy/endoscopy last year as a part of being diagnosed w/ Gastroparesis. I also have (among other things which I’m not sure are as relevant) - T2 Diabetes, Hashimotos Thyroiditis (late 30’s) Chronic Kidney Stones (since age 40), Osteoporosis (way before Menopause and not well controlled), and Gallbladder disease.(was removed) I’m discovering that all those I listed may be related in some way, and related to Celiac.  I haven’t seen the gastro doc for followup since the testing (obtained results from lab) so I’m not sure what he’s going to recommend.  Here’s where it gets scary... my daughter has many of the same things. She was just diagnosed with EDS (Ehlers-Danlos Syndrome) at 32.  She was diagnosed w/Glucose intolerance at 15, had her Gallbladder removed at 20, PCOS at 22, and Gluten intolerance at 30 (no testing, just her gastro’s recommendation). She’s been diagnosed w/Gastroparesis, POTS,  MAST Cell Activation Disorder, Peripheral Neuropathy, (lost use of her bladder and has a neuro stimulator) - all in the last year.  Too much coincidence for me.  This has to be all related. I keep reading more and more studies linking all these things (like EDS and Celiac) together. My daughters  geneticist is blown away by the multiple overlapping and co-morbid conditions we have and tells us it’s not uncommon. She also says research is expanding.  Sadly, the specialist docs seem baffled and can’t even begin to address our issues, and only help to manage the symptoms - sometimes. And every “Disease/Disorder” has a “diet” or protocol, and they are all at odds with each other - very frustrating.  I guess the moral of this story is to let others know that there’s a lot more to all this than meets the eye. Don’t let anyone tell you you’re fine if you have what seem to be strange unrelated symptoms. You’re not crazy. Keep fighting for understanding and knowledge. Be an advocate for yourself, you’re loved ones,  for us all.      
    • Nice to know that Disney makes an effort to take care of people with allergies or special diets (like gluten free!): https://publicaffairs.disneyland.com/walt-disney-parks-resorts-receives-honors-allergy-friendly-fare/
  • Upcoming Events