Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

In The Middle Of Testing

6 posts in this topic

Could use a little support or feedback or something. Kinda in limbo at the moment.


Had symptoms which celiac could explain for *years.* Primarily (but not limited to) intense abdominal pain/GI issues and fatigue/energy issues. Talked to my doctors last year, but unfortunately I didn't talk to my PCP herself, and I ended up having my worries sort of blown off by the nurse practicioner I spoke to (we did eliminate thyroid issues, diabetes, and severe anemia as causes, at least; this year we also eliminated vit D deficiency, liver issues and gallbladder issues). Talked to my PCP *this* year (Late September) and made sure she knew just how bad the pain is and how often it happens, and she ran a couple of tests including a celiac panel, which she and I both thought was a short in the dark. She called me back early October and said it looked like celiac was a good possibility, which was initially really depressing, but have since done a bit of research (including reading through some of the stuff you guys posted here) and switched over to hopeful, because if cutting out gluten would actually get rid of the pain issues and the fatigue/energy issues, Oh My God would it be utterly worth it, and it seems like it wouldn't be nearly as restrictive as I initially feared.


Anyway, met with GI specialist a few weeks ago who said based on test results I amost definitely do have celiac. (TTG, IGA 15 (flag reference range =<4), GLAB IGG >100 (flag range =>20), GLAB IGA 58, flag range >=20)- all with significant amounts of gluten-y bread products in my regular diet, in case anyone asks.) She reccommended endoscopy to get more data.

Had upper endoscopy today. Not a fun thing, but glad it's over and done with. She did the endoscopy herself, and said there were no obvious signs of celiac disease, but she's waiting on biopsy results, which we will discuss when we meet next week. Meantime she wants me to get the blood tests re-done in case the blood test itself was a false positive, which I will do on Saturday. She still seems convinced I probably have it and that I may be either be not be in a particularly severe phase with it, else the damage is farther down than she actually went. She's still encouraging me to stop gluten now (now that the endoscopy's done), so I can feel better asap.

I at this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that. I'm pretty dang sure the energy problems and pain I get really *aren't* normal, and I've been sort of in denial about that for a long time. If it's not celiac, that means there's some other cause, and I'm already very, very tired of doctors and tests (and taking time off of work and away from leisure time to see doctors and get tests, night I add.) So now, it'll actually be even *more* depressing if it's *not celiac.

Anyway- anyone had similar experiences? Knowledge, wisdom, hope, etc. to empart? This forum has actually already helped me tremendously, though I haven't posted yet. =)


Share this post

Link to post
Share on other sites

Ads by Google:

Welcome to the forum, but sorry you have to be here. :)

Your blood tests look very positive. (I'm not familiar with the GLAB tests but my mind is a bit foggy with a cold tonight.) With so many positive tests, that's really indicative of celiac; I doubt you are a false positive as that's pretty rare. With a biopsy, most celiacs have said that their damage could not be seen with the naked eye so waiting for the microscopic examination is a good idea.

You might want to look into getting your calcium, B12, and ferritin levels checked. Celiacs are often low in these and that makes the fatigue worse. You might want to check your thyroid too since celiacs are more likely to develop Hashimoto's than the rest of the population; good test for that are TSH, TPO Ab, and free T4.... my energy problems did not go away with a gluten-free diet because I have hashimotos, but my GI issues are much much better.

I wish you luck starting out on the gluten-free diet. I found the first few weeks difficult because I went through a withdrawl where I was very cranky, tired, cranky, hungry, and cranky... I mentioned cranky right? LOL ;) Hang in there. After a month the diet was already starting to seem easy. It's not that difficult to follow if you focus on preparing your own meals from simple and real foods rather than buying gluten-free substitutes.

Glutamine is helpful to some to aid in healing, and many around here swear by probiotics... I'm sure others will chime in. :)

Good luck and best wishes!


Share this post

Link to post
Share on other sites

I at this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that. I'm pretty sure the energy problems and pain I get really *aren't* normal, and I've been sort of in denial about that for a long time. If it's not celiac, that means there's some other cause, and I'm already very, very tired of doctors and tests (and taking time off of work and away from leisure time to see doctors and get tests, night I add.) So now, it'll actually be even *more* depressing if it's *not celiac.

I know this feeling. I hoped it was and hoped it wasn't. I took my genetic results to the MD hoping she would debunk them, but she backed them up. That along with my symptoms as I went gluten free firmed up the diagnosis. I know what you mean if it is not Celiac then whatever could it be? I was both relieved and disappointed in my positive results. Celiac is something that you can do something about. The unknown disease is mysterious and looming overwhich you have no control.

I hope your test results will be instructive and clear for you. It sounds like you already have a positive response to the diet and that is great!

Get well, soon,



Share this post

Link to post
Share on other sites

The endoscopy results confirmed celiac, BTW. I'm having my doc mail out the results (I don't doubt her, I just like having that kind of info), but she said that (IIRC, and I she RC) at least 4 out of 6 biopsies confirmed it, and the blood re-test confirmed it, too. I'm having a f/u with her in three months.

She wants me to have one more endoscopy done maybe half a year out or so (she seems quite convinced that this will be a necessary thing). I'm not so sure I'm going to actually be willing to do that, but it's a long way out, so we'll see. There will have to be some obvious demonstrable benefit to having another one done, or an obvious risk to not doing one. How willing I'm going to be will depend on how I'm feeling and what my blood tests are saying- she was able to explain why I might need one done, but she definitely didn't sell me on it, lol.

I'm sold on going gluten-free, anyway. It seems doable, but it seems like the transition's going to be a pain in the butt. :/


Share this post

Link to post
Share on other sites

Em, my GI doc has not suggested that I have a repeat endoscopy/biopsy so I haven't had to ponder that. I do have annual blood tests, which come back negative so obviously I'm doing something right.

Going gluten-free is very doable and I agree that it's a pain in the butt...but once you get used to it, it becomes pretty easy. If you check the recipe section, you'll find that we eat very well. The only thing I really miss is the spontaneity of grabbing a fast bite to eat anywhere I choose.


Share this post

Link to post
Share on other sites this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that.


And *that's* the most important thing.

It can be tough to get used to eating a new way, but wow is it ever worth it as symptoms fall away.

Congrats on your Dx & healthier rest of your life!


Share this post

Link to post
Share on other sites

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
  • Topics

  • Posts

    • Gluten And Vertigo
      Christiana, I just felt to look at the site. I thought I had clicked to get email alerts. But, actually my email has been 'fritzing' sort of.  Thank you for your note. It is important for my diagnosis. I was diagnosed with chondritis of the collar bone a few months before the fall that resulted in the immobile right arm. The osteo surgeon gave me a cortosol shot that helped a lot. That MRI showed a rotator cuff tear nearly 2/3 thru the strip of tissue that connects the muscle tissue to the bone and makes the shoulder 'rotate' in place.  That was almost a year ago now. I have been learning to be very very mindful about how I use that arm, when I reach, carefully, how I rest it and sleep position. Interesting that I did see a search answer that said ' they are saying now that there could be a connection btn rotator cuff tear and inflammed collar bone. My primary doctor also said I could have an inflammed chest wall that resulted in the chondritis. I remembered that word from a child's diagnosis years ago. That was in his knees and was treated by this same osteo surgeon, by casting the legs over summer holiday, which ended in healed x-rays. That was osteo chondritis desicans. He said then, 'if it is horses, we would have to shoot them.'  I tried to get a blood test three weeks ago for the same antibody we were treating that child with thru his then pediatritian, for rheumatoid antibodies/ recurring strep throat. I had gotten a 'sort of' diagnosis, or agreement from that primary care doctor, allowing me to get the recommended antibiotics (one of the few treatments that it is allowed, because of the need to keep the hearing). But, his new nurse did not relay the request properly. I hate doctor office politics. I hope this newbie is not going to mess with this doctor's little family as well. Last month when researching Meniere's one of the things listed about it was that autoimmune disease is connected to it also. I was hurt before the falls and the inflammation and the collar bone chondritis and the rotator cuff tear. I was very very concerned about it setting off some kind of autoimmune inflammation reaction or worse that can happen when tissue cells are being repaired rapidly and it felt like lots of toxins were being cleansed and processed over a period of many months. The only similar feeling I have ever experienced was when I had a 'deep tissue massage' to release and cleanse a cortisol 'hump' I had after a prolonged period of high family stress situation. Right now, my primary (an O.D. , or osteopath) is working with me. There are two ENTs in this area he offered for Meniere's and has given me Physical Therapy at his complex for Balance Therapy. It is great that that therapist has a MIL that is also dealing with Meniere's and getting exercises from a major hospital complex in the city. I was able to give her some celiac's diagnosis information. Sounded like her MIL and her son were likely to be candidates.  I did not know what the definition was of the term 'vestibular' as in vestibular migraine, another connection to Meniere's. I just typed and then typed 'definition of vestibular.' That had information about the connections btn hearing and sitting positions. I will look up costochondritis. Thank you, again. Best wishes, Anne
    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others. OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
    • Mashed potato soup during healing
      I was on pretty much a liquid diet for 8 months waiting for my nausea to go away completely. I mostly had mashed potato soup, 1/2 fat ice cream (mostly whey, not milk), chocolate drink (no added milk) and gummy vitamins. The soup tasted yummy and I'm still alive so I figured I'd share it for people not feeling well in the beginning. I've been noticing people with alot of trouble keeping food down in recent posts. I couldn't have milk or eggs, but the cheese in the recipe didn't bother me at all. Notice the lack of spices. Makes it easy on the stomach.   Mashed potato soup: Boiled yukon gold potatoes (5lb bag) 1 package cauliflower, steamed 4-6 slices of Land O'Lakes white American cheese 4 tablespoons butter salt 16 cups homemade chicken broth, salted   Chop steamed cauliflower into teensy bits (pureed is better). Put in mixer with butter, cheese and a potato or two. Blend while slowly adding potatoes. Keep whipping for a few minutes to insure the cauliflower and potatoes are not lumpy at all. Salt to taste.   Combine 1/2 cup mashed potatoes to 1 cup salted chicken broth. Mix with spoon until mashed potatoes have completely dissolved. Enjoy. Individual servings can be frozen.   Homemade chicken broth: makes 8 - 10 cups of broth   1 organic chicken (regular chickens are too big) 1 stalk celery 1 carrot 1 large bay leaf 1/2 package fresh thyme from the  herb section of the vegetables area   Put all ingredients in pressure cooker along with 1.5 liters water. Bring to pressure. Cook for 35 minutes. Separate broth from solids. Separate broth from fat. Add ridiculous quantities of salt until it tastes like soup. Sorry I use a salt grinder so I don't have precise salt quantities.    
    • Gluten-free options increasing to meet demand
      “Over the last 10 years there's been an explosion of gluten-free products,” said Shelley Case, a registered dietitian specializing in celiac disease and ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it. Thank You,
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member