• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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.

Seeing The Gi Tomorrow
0

9 posts in this topic

Finally, my appt is almost here!!!  Not exactly sure what to expect tomorrow but glad it’s almost here.  Made this appt at the request of my doctor after my blood tests came back negative but genetic tests were positive.  Low carbed for 6 weeks prior to blood tests and felt great.  Ate “normal” for 2 weeks before giving up and having the blood tests.  I know I should have eating gluten longer than 2 weeks.  After several late night episodes, I hastily made the decision to have the test done then.  Now, I’m just ready for a diagnosis (good or bad) so I can move on.  I have felt so bad for the last 4 weeks.  Tired of being tired and feeling puny all the time.  Tired of the many gastro issues.  Tired of the all it.  Uuuggghhh!!!!!

 

Sorry…I know I’m whining.  L I’m beginning to feel like Debbie Downer.

0

Share this post


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


Good luck with your appointment. I too am sick and tired of being sick and tired and the GI issues... I'm ready for that to resolve too.

 

This is the place to go to when you need to vent your frustration. Sometimes I feel guilty about talking about my disease - I can't change it and it effects daily life - it's hard not to talk about. But the non-celiacs are probably going to get tired of it. My mom advised me last week to "not talk about the diet so much with Phil(my boyfriend) because it may push him away" Thanks mom. And btw - Phil is supportive and has fully accepted with enthusiasm the gluten-free household rule. Bless him. Now once I remove all the cross contamination issues (mostly tupperware, cooking utensils (wood) and nonstick pans) I think we are finally going to be on the right track.

0

Share this post


Link to post
Share on other sites

Good luck. Let us know how it goes.  :)

0

Share this post


Link to post
Share on other sites

Good Luck Jamie!

 

Thanks Nicole!

 

I had my son's blood tests done today.  Should knows those results in 2 weeks.

0

Share this post


Link to post
Share on other sites

Sorry for that rant and Sorry this is long.

 

A little disappointed in my GI doctor and who knows maybe he's right with everything he said but it just didn’t sound right and then again I’m no expert. 

 

We discussed all my symptoms and he reviewed my blood tests results.  He explained that just because I have the genes does not mean I have celiac disease, which I already knew.  Then, he said you must have 3 things to get diagnosed with celiac disease: 1) symptoms, 2) positive blood tests, and 3) positive biopsy.  He said since I didn't have a positive blood test, then he doesn't think celiac is my issue and started discussing fibromyalgia and crohn’s disease.  Kept pushing those even when I explained that when I ate low carb, I had NO ISSUES… NONE.  Now correct me if I’m wrong because I know nothing about crohns disease or fibromyalgia but would eliminating carbs correct crohn’s or fibromyalgia? 

 

Fibromyalgia - really??  I don’t think so.  My back hurts because I have bulging discs and degenerative disc disease and my knees hurts because I have too much weight on them and my patella’s sit too high (both my children have the same issue and must wear braces for sports).  He wouldn’t listen to those reasons.

 

Crohn’s Disease – not sure.  After looking it up in the internet, I have some of the symptoms but not many.  Mainly abdominal pain and cramping.

 

He has set me up with an upper and lower GI and told me if both of those didn't find anything then it's probably just IBS.  Told me I was probably lactose intolerant and how to do a self test on that.  We discussed the possibility of a vitamin D deficiency and told he to have it checked the next time I had blood tests done.  I asked what other vitamins I should check and he said none.  Vitamin D was the one he thought I was low on.

 

Am I crazy?  Should I be concerned or not?  I feel like because my blood tests were negative, he has already made up his mind that I don’t have celiac even if the biopsy come back positive.

0

Share this post


Link to post
Share on other sites
Ads by Google:


Show him this from Johns Hopkins, and point out that at the bottom of the list of symptoms there is a bit about how some people are asymptomatic. Ask him to google "silent celiac". Then ask him to google "false negative celiac blood test".

 

http://www.hopkinsmedicine.org/healthlibrary/conditions/digestive_disorders/celiac_disease_85,P00361/

 

Or better yet, find another doctor.

 

Or you could just go gluten-free on your own. Many of us are self-diagnosed. Since you know you have the genes you already are aware that your first degree relatives are at risk. Unless you think a definitive diagnosis will help you stick to the diet, you don't need a diagnosis, IMO.

0

Share this post


Link to post
Share on other sites

I've already made up my mind to eliminate gluten regardless of a diagnosis and I agree with the new doctor.  I was very disappointed with him.  I completely understand that celiac may not be my issue but for him to disregard it so quickly was very aggravating.  I think I will stick with having the upper and lower GI Tuesday, couldn't hurt since I've never had either of them. 

0

Share this post


Link to post
Share on other sites

Good luck with the scopes. Hopefully the results will be very clear one way or the other. If you can, try to push for many samples to be taken - I believe six or more is considered adequate. Try to eat some gluten over the weekend if you are able...

 

Hope it goes well.

0

Share this post


Link to post
Share on other sites

Thanks Nicole.  That is the one thing I failed to ask yesterday, the number of samples he would take.  I will find out before having the scope. 

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
      106,460
    • Total Posts
      930,678
  • Member Statistics

    • Total Members
      63,884
    • Most Online
      3,093

    Newest Member
    Mato Sapa
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
  • Upcoming Events