Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 FREE Celiac.com 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 Celiac.com Store.

So Confused. Celiac Or Not
0

19 posts in this topic

Hey guys,

As some of you will know, my Dr sucks and after a negative test for Hypothyroidism, he didn't want to test for Celiacs. So I did 2 home tests with the Biocard. Which is the same procedure that most labs will use. Both tests were positive. The tests, test for gluten antibodies in your blood. If you have them, I cannot see why other than celiacs?

I followed a gluten free diet for 8 weeks. I still feel really tired. I then received a letter through the post, asking me to go for a follow up appointment at the Dr's, so I went along and explained what I'd been doing. He said he doesn't know how accurate these home tests are, and he seemed doubtful that I had celiacs, because my B levels were average and my iron, though bottom end of normal, I still had a normal blood count.

So I thought screw this, I went to Mcdonalds and had a big mac, expecting that if I do have celiacs, I'd instantly be crippled over in pain. However, I wasn't. I got terribly bloated, like I've never really had before. Slight stomach discomfort and today my fatigue is so bad, I've just got out of bed at 6pm. But I don't know what to think now. I don't have diarrhea and didn't get terrible stomach pains.

I asked to see the Hypothroidism test results. But only one reading was taken and it was 0.7. I think it was TSH? Hmmm. As he said it was normal. I'm guessing nothing to concern myself with there.

I hate my Dr for putting me in this position. I don't know what to do next.

Thanks for any advice.

0

Share this post


Link to post
Share on other sites


Ads by Google:

I've just been reading a little on thyroid. Apparently it's possible to have a normal TSH reading but still have issues. Secondary hypothyroidism etc. But I'd need to get my other levels checked.

The stupid, darned, idiot of a Dr, should be working a little harder with me, to find out why I'm exhausted to the point I cannot work. I could cry right now!

0

Share this post


Link to post
Share on other sites

You don't have to have diarrhea or stomach pains for it to be celiac. The symptoms you did have could be celiac. But is it really celiac? I can't say.

richard

2

Share this post


Link to post
Share on other sites

Gosh, I'm so sorry you're having to deal with all this. I don't know how accurate the home tests are, but if 2 of them came up positive for the antibodies, I would think that means something.

Also, Richard is right that not all Celiacs get diarrhea or even any GI symptoms. My thyroid testing has always been in the normal ranges--even at my sickest except for once right before I was diagnosed when it was borderline low. It normalized again within 6 months gluten-free.

I do know that the fatigue can take a while to abate--it took me a good 18 months before I was not tired all the time and for my more emotional symptoms to improve. It's sometimes a slow process and it's hard to predict how any one of us will respond--it depends on how damaged your system was, how quickly you heal in general, how long you have had Celiac--you could have had it for a period of time and been asymptomatic.

How are you doing with your elimination diet?

2

Share this post


Link to post
Share on other sites

Thanks guys for the replies.

From what I can find online, Biocard is very accurate. As accurate as the lab tests.

Elimination diet I stopped, as I just wasn't eating. I figured it was healthier to at least eat. I'm still gluten free, minus the Big Mac.

I have been tired now since I was 13-14 so we're talking 16-17 years. I struggled all through school, with constant tiredness, often just day dreaming or trying to fall asleep with my head on the desk. I was told that's normal for teenagers, though none of my friends had the same issue. No tests were done.

I have gotten progressively worse I'd say. Right now, I feel as though I've been drugged. My brain just feels completely underpowered. Brain fog is horrific.

I do often have diarrhea but I've not actually been to the toilet since I eat the big mac over 24 hours ago. Strange.

I also have a horrific headache right now. I feel like lost cause.

1

Share this post


Link to post
Share on other sites




I feel like lost cause.

You're not :)

Right now you are probably feeling the effects of the Big Mac. How about supplements? Do you take any?

1

Share this post


Link to post
Share on other sites

Hi Patti, I do. But apparently my B levels and Iron are OK. But I take B vits, Multi vit, Iron, Fish oil, Pro Biotics, digestive enzymes.

Googling makes me feel like a hypocondriac. But I was just researching adrenal fatigue. Which I suspected because when my adrenaline kicks in, before a race, exam or whatever, my arms and legs go numb and I feel extremely light headed and almost lose all feeling in my body. It's always felt extremely over reactive.

Symptoms are:

excessive fatigue and exhaustion

non-refreshing sleep (you get sufficient hours of sleep, but wake fatigued)

overwhelmed by or unable to cope with stressors

feeling rundown or overwhelmed

craving salty and sweet foods

you feel most energetic in the evening

a feeling of not being restored after a full night's sleep or having sleep disturbances

low stamina, slow to recover from exercise

difficulty concentrating, brain fog

Also often have hypoglycemic feelings where I NEED sugar. i go light headed, shake and feel weak. Eating sugar quickly resolves it usually.

All of which I experience. Not sure I want to approach my Dr, for tests. As he looks at me like I'm crazy. He somehow doesn't feel the need to get to the bottom of this.

1

Share this post


Link to post
Share on other sites

It's not just your B vitamins you should worry about? Do your know our levels of D, A, E and K? By your B's I'm assuming you include B12 and folate? Have you had your potassium, zinc, calcium checked? These levels are all important and few doctors check them unless asked. And you should get copies of all your test results, because what a doctor may consider okay, i.e., low normal, may not in fact be okay. You really need to be mid-range in these things to feel at your best. I never trust a doctor to just tell me everything is okay. :P

1

Share this post


Link to post
Share on other sites

I would say the bloating and brain fog are indication enough. Strangly before going gluten-free, back when everything under the sun gave me diarrhea McDonald's food did not. In fact it was the only place I could eat on road trips...Go figure.

Also not all of my glutenings have been the same. Usually I get hit by CC and get diarrhea within an hour...Then one day I ate 1/4 of a burger before I realized the mushrooms were actually gluten containing mushroom gravy so I got a good dose of gluten and no diarrhea...just brain fog, fatigue, and bloating.

1

Share this post


Link to post
Share on other sites

Thanks Mushroom, though I feel reluctant to ever go back to the Dr's again. I think I'm going to go private.

Iynnelise, you're right. I accidentally eat gluten in a sauce, and within an hour I was in agony and had terrible diarrhoea.

I figured eating a whole big mac, would be such a big dose I'd be a lot worse.

All so confusing.

1

Share this post


Link to post
Share on other sites

Brain Fog or celiac brain as we call it around here. It got worse after being diagnosed. Slowly gets better. I think that we want it all now. Want to feel good now.... it took us years to get to this point and will take awhile to get completely well again. Easier said than done I know.

1

Share this post


Link to post
Share on other sites

Getting drained of energy after a glutening is probably the most reliable reaction for most people around here along with the bloating. You may get D, you may get constipation, or you might just get some cramps but that tiredness seems to happen most every time. Since the elimination diet seems to be a little difficult right now you should try the milder approach of making a food journal to plot minor/major digestive, health and mental issues along with what you've eaten each day. After a decent amount of entries into the journal you can use it to try and analyze possible associations between occurrences of symptoms and you diet for that week. Alternatively you can go with a nice little ABAB design self study where you go heavy on consumption of a type of possibly offending ingredient for a week or two (A) then completely drop it from your diet for the next two weeks (B) then go heavy again (A) and once again remove it from the diet (technically BCBC for psych nuts). Sometimes the gradual changes like going from eating 5 eggs a week to none are harder to notice than more severe contrasts like going from eating 40 eggs to none.

Additionally considering some of the symptoms you mentioned, you may wish to eventually play around with your carbohydrate consumption levels some in the same ABAB fashion mentioned above.

1

Share this post


Link to post
Share on other sites

Did they check your ferritin level? I was severely deficient in ferritin with a normal blood count and was vitamin D deficient also. With both levels raised I feel good! To get a complete thyroid test you need a TSH, free T3, free T4 and thyroid antibodies.

0

Share this post


Link to post
Share on other sites

My big, full-on "glutened" symptoms are usually migraine headache, bloating, constipation, and intense fatigue (this was my life for the months before I went gluten-free). I seem to get D more often with smaller doses (i.e. cross-contamination)- maybe my body tries to flush those out, but with a bigger hit it seems like my gut can't deal with it all and instead just shuts down for a few painful days.

0

Share this post


Link to post
Share on other sites
Did they check your ferritin level? I was severely deficient in ferritin with a normal blood count and was vitamin D deficient also. With both levels raised I feel good! To get a complete thyroid test you need a TSH, free T3, free T4 and thyroid antibodies.

No, those were not checked. He didn't check free T3 or T4 either. Nob.

My big, full-on "glutened" symptoms are usually migraine headache, bloating, constipation, and intense fatigue (this was my life for the months before I went gluten-free). I seem to get D more often with smaller doses (i.e. cross-contamination)- maybe my body tries to flush those out, but with a bigger hit it seems like my gut can't deal with it all and instead just shuts down for a few painful days.

That was my experience exactly. I had a little gluten last week and ended up with D and terrible cramp. Since the big mac, I've not been to the toilet. Even after I had a Costa Latte, which usually makes me need the toilet within 10 minutes. Crazy.

0

Share this post


Link to post
Share on other sites

Hi there,

My glutenings are completely random - sometimes insane D, sometimes C for a few days followed by D. I always get a headache, tiredness, anxiety, crying over anything though. I think a big hit of wheat seems to "shut down" the whole system, whereas a small dose will damage just enough to get D.

Unfortunately one dose of McD won't really give you proper results - a proper "gluten challenge" would be plain cream of wheat or some other single-ingredient food, eaten 3 times a day or so. Then you'll know if you're intolerant to gluten, because you'll probably get pretty sick very quickly :P

I ate semolina for breakfast and after lunch for 2 days in a row for my gluten challenge, and felt so *weird* I just had to stop, I also didn't notice that much D, but boy did I want to crawl out of my skin. Now accidental trace glutening causes bad nausea, stomach ache, D etc etc.

0

Share this post


Link to post
Share on other sites

Thanks guys, I feel much better, knowing my symptoms were quite typical.

0

Share this post


Link to post
Share on other sites

I've just been reading a little on thyroid. Apparently it's possible to have a normal TSH reading but still have issues. Secondary hypothyroidism etc. But I'd need to get my other levels checked.

The stupid, darned, idiot of a Dr, should be working a little harder with me, to find out why I'm exhausted to the point I cannot work. I could cry right now!

I've had fatigue like you are experiencing!! You need fresh ginger root from the produce section of your grocery store, read about ginger it is a miracle food and give me the energy I so desperately need everyday. You can just cut it up in peices and put it in hot water, let it sit for 5-10 mins, and drink away, add honey. You will be AMAZED!! It is also a digestive aid, I drink ginger tea after every meal, and when I accidently on purpose eat food containing gluten, it stops the pain...

keep me posted!

0

Share this post


Link to post
Share on other sites

JDA7876 I'm definitely up for trying it. Thanks for the tip. I've not heard of ginger as an energy aid. I miss ginger biscuits :D

0

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
0

  • Forum Statistics

    • Total Topics
      103,366
    • Total Posts
      917,513
  • Topics

  • Posts

    • 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.  Anyway...no 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 something...like 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.    
    • I have kidney stones...spent last night at the ER
      Hey ArtG, I saw the urologist today...unfortunately for me they can still see my stones on an xray.  Sigh.  The largest is 3x6 in my right kidney.  He does not believe I can pass this one on my own.   All of my bloodwork came back fine.  Nothing alarming in the urinalysis either. His recommendations...keep drinking tons of water.  I had 4.2 liters of urine output when I tested.  Add in a fish oil supplement.  Decrease sodium intake.  Limit meat to 10 ounces per day.  Increase dietary calcium.   Work at lowering oxalate consumption...my urinary oxalate was 45.  They want it between 20 and 40.  But he gets people that are over 100 so mine is not all that high. 3 options...1. watch and wait.  Recheck in a few months to see if there is stone growth.  2. Shock wave lithotripsy.  3. Let it come out when it decides to and see what happens. I just don't know.  I hate the idea of being put under as they would do for the shock wave thing.  I've had too many surgeries already.  It scares me to be honest.  I also don't want to deal with another episode.   I don't know what I'll do.  We've got a vacation planned at the end of the month and I just want to go and enjoy that.  Not worry about kidney stones. I'm sorry to hear about your upcoming surgery...it really is always something!
    • celiac disease is psychosomatic
      I know what food products are. Probiotics was a recent example I saw on the news about things labeled gluten free that were not gluten free. So, supplement labels in addition to food labels.
  • 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.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 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)

  • Member Statistics

    • Total Members
      60,513
    • Most Online
      1,763

    Newest Member
    ajrosales
    Joined