• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Should I Re-Test?
0

8 posts in this topic

Okay, here's my story:

All growing up I had the stomach flu every year until my late teens. I had bronchitis and strep a lot as well.

When I turned 18, I was a nanny for my aunt up in Michigan and suddenly developed a severe stomach issue; I lived on yogurt for several weeks. I went to the doctor and they did several tests, including a stomach x-ray that required me to drink a paint-like substance. Nothing. I don't know what made it subside, but after several months, it finally did. I didn't ever connect it to something I was eating.

In early college, I developed temporary paralysis and passed out a lot. I had several MRIs, CAT scans, and EKGs. Nothing. One doctor said stress, one said migraines, another said epilepsy. Stress did seem to affect it quite a bit, and I had a very rough few years in college. Lots of stress and trauma, and suffered from depression.

Still had the problem off and on for years, but have not had this issue for a couple years now. However, about a year ago or less, I suddenly had a major migraine and couldn't speak. I was taken to the ER from work and just given migraine meds. Getting two of my wisdom teeth removed seem to have helped that situation mostly, though I still get headaches fairly frequently.

2 years ago I fell and injured my knee at work. I went to an orthopedic, who told me I have arthiritis. I'm in my twenties.

About 2 or 2 1/2 years ago, I developed mild gas and bloating. Constantly. Pretty much 24/7. In the last few months it has gotten much more severe, including severe cramping. A few weeks ago my arms started turning purple and my hands were tingling and going numb. I had blood tests done and was told my vitamin D was low. Nothing I could find online attributed D deficiency to my symptoms, but what concerned me most was that my D was low at all. I have D in my multi-vitamin, which I take every day, and I also take an additional D supplement. I also drink a lot of D fortified milk (lactose free as of 5-6 months ago). I found celiac when I was researching causes for D deficiency.

I had my doctor test me for celiac and they took blood last week. I got the call today that my test came back NEGATIVE. But I have so many symptoms! Gas, bloating, cramping, constipation, fatigue, anxiety and depression (for no reason), and frequent infections (respiratory and urinary). Not to mention, the arthiritis in my twenties, and my medical history. No one in my family has been diagnosed with celiac, but one of my brothers has been describing smiliar sypmtoms to me. He turned 20 this year and has frequent stomach problems.

I've decided to pursue a gluten-free diet, regardless. But should I insist on a biopsy or another blood test? I just want to know why I'm sick all the time! I imagine my boss would too.....

0

Share this post


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


Insist on the biopsy before you start the diet. Not only is it a good chance to look for any other issues, but it might give you an idea of what is going on. Genetic test wouldn't be to far off either.

1

Share this post


Link to post
Share on other sites

You might want to get a bone density test done. Bone density is often low in untreated celiac disease.

0

Share this post


Link to post
Share on other sites

Hold off on removing gluten until you are sure all testing is complete.

Request written or electronic copies of the tests that were run. If you are unsure what they mean, post them here - many of us can help interpret. Many doctors only run one or two of the complete celiac panel.

I would push for complete blood tests along with an endoscopy.

Good Luck to you :)

1

Share this post


Link to post
Share on other sites

I'm in a similar situation, having lots of symptoms but every test comes back negative. The only thing that's shown up for me is low vitamin D and low ferritin, which seems odd since I've been taking high quality vitamin D3 supplements for years. The low ferritin was surprising because I cook with a cast-iron skillet and eat iron-rich foods, often with citrus or vitamin-C-containing things which is supposed to help it be absorbed.

All my symptoms can't be explained by vitamin D and ferritin being low. But all the tests come back negative. I had a relative who tested negative for celiac but later had to have intestinal surgery. She was diagnosed with celiac based on the damage they found to her intestine. I've heard of many cases of false negatives from looking around online, especially on these forums. Sometimes it's really hard to get diagnosed.

I know this process is really frustrating but do lots of research and don't give up!

I've found in my research that there's a correlation between epilepsy and celiac disease. My younger sister has blood-test confirmed celiac (her numbers were so high they didn't bother to do a biopsy) and she has migraines as well.

1

Share this post


Link to post
Share on other sites
Ads by Google:


Hold off on removing gluten until you are sure all testing is complete.

Request written or electronic copies of the tests that were run. If you are unsure what they mean, post them here - many of us can help interpret. Many doctors only run one or two of the complete celiac panel.

I would push for complete blood tests along with an endoscopy.

Good Luck to you :)

Thanks!! I requested the test results, so I should have them in a couple days. I also have an appointment with a GI today at 12:30. Crossing my fingers! Also, realized that I have recently developed pits in my nails (but no skin rashes) and hair loss, and this morning I have hives on my stomach area. Getting interesting! Lol. I also am struggling with depression pretty bad, but I am very hopeful.

Really, bottom line is, even if they come back and say "negative" again after the biopsy, I'm still going to treat myself as if I have celiac. I am confident it will clear up on a gluten-free diet.

Thanks so much for your input! I'll be back with test results later! Looking forward to becoming an active member here.

0

Share this post


Link to post
Share on other sites

I'm in a similar situation, having lots of symptoms but every test comes back negative. The only thing that's shown up for me is low vitamin D and low ferritin, which seems odd since I've been taking high quality vitamin D3 supplements for years. The low ferritin was surprising because I cook with a cast-iron skillet and eat iron-rich foods, often with citrus or vitamin-C-containing things which is supposed to help it be absorbed.

All my symptoms can't be explained by vitamin D and ferritin being low. But all the tests come back negative. I had a relative who tested negative for celiac but later had to have intestinal surgery. She was diagnosed with celiac based on the damage they found to her intestine. I've heard of many cases of false negatives from looking around online, especially on these forums. Sometimes it's really hard to get diagnosed.

I know this process is really frustrating but do lots of research and don't give up!

I've found in my research that there's a correlation between epilepsy and celiac disease. My younger sister has blood-test confirmed celiac (her numbers were so high they didn't bother to do a biopsy) and she has migraines as well.

Very interesting! Thanks for your feedback. I have an appointment with a GI today, so we shall see what happens. Also have an appointment later in December to get allergy skin tests. My low vit D is what started me on this research, because I have D in my multi-vit, take an additional D supplament every day, and drink D fortified milk, so I was like "what?" D didn't explain my symptoms either, but I've decided to go on the gluten-free diet (and probably diary free, at least for the first few weeks), no matter what the diagnosis is.

Thanks so much for your response!

0

Share this post


Link to post
Share on other sites




Thanks!! I requested the test results, so I should have them in a couple days. I also have an appointment with a GI today at 12:30. Crossing my fingers! Also, realized that I have recently developed pits in my nails (but no skin rashes) and hair loss, and this morning I have hives on my stomach area. Getting interesting! Lol. I also am struggling with depression pretty bad, but I am very hopeful.

Really, bottom line is, even if they come back and say "negative" again after the biopsy, I'm still going to treat myself as if I have celiac. I am confident it will clear up on a gluten-free diet.

Thanks so much for your input! I'll be back with test results later! Looking forward to becoming an active member here.

Low D and hives on my stomach that spread to my arms and feet were what finally helped get me diagnosed. I never had the rash biopsied - when I removed gluten it never came back.

Take pictures of skin issues and any drastic bloating - these were very helpful during my diagnosis.

Again - welcome - glad you have joined us :)

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
      107,350
    • Total Posts
      935,647
  • Member Statistics

    • Total Members
      65,033
    • Most Online
      3,093

    Newest Member
    Catlee
    Joined
  • Popular Now

  • Topics

  • Posts

    • Is your concern the social aspects of eating on the job, or not always feeling well enough to get out the door? I'm in health care, and just happened to be in home care when I was diagnosed.  It actually works well, as I make my own hours, and can reschedule visits as need be. I would think you could complete your MBA easily, maybe part time if necessary.  It's not clear what your career path might be ....counseling?   Industrial psych? Research? Once you are established (and you can do that part time if need be, to start), you will have more options for flexed or reduced hours.  If the social aspects of eating are an issue, you can always excuse yourself at meals, drive to a pleasant location, and eat in your car. Or go for a walk and find a place to eat. For work luncheons,  I just have a beverage or pick up a piece of fruit, so I give the appearance of participating. 
    • Can you tolerate nut milks? I find macadamia milk the gentlest on my stomach. The only brand I've seen here in the US is Milkadamia, and it comes sweetened or not, and fortified with some vitamins. I think this brand is from Australia. Or you could make your own. As for time, it can take awhile, and that seems to be more the norm. A recent new dairy intolerance that peaked May 3 has made me sicker than celiac ever did. Almost 3 months later and I am just starting to get better and my fatigue is improving. I had the usual ups and downs, inadvertent exposures, and trial and error.  I had only mild symptoms (comparitively speaking) at my celiac diagnosis 4 years ago, yet it took 6 months to a year for them to fully resolve after going gluten-free. It's hard to be patient when your GI tract is off, as it makes you feel ill all over.  Just keep doing the right things, introduce new foods one at a time. I would also suggest more protein for weight issues ... can you tolerate tuna? Tuna and some version of mayo? Salmon, vitamin D supplements, and bone broth seemed to have helped me recently with gut healing. Wishing you well...  
    • Thank you for your response! Again I am pretty sure my doctor did all these checks however I will definitely check to make sure and take the necessary actions if not. It just feels like a never ending run of doctor appointments and blood tests at the moment and the whole thing really did come as a surprise to me. I think I have really tried to eat healthy as I believe its so important especially being diagnosed with this disease. I feel as though its not just about eliminating gluten but also having a really healthy and balanced lifestyle. Also, I find that at the moment it is not just gluten that upsets my stomach, fruit for some reason also does. Unfortunately, people do not realize this and dismiss it which can also be annoying on top of the diagnosis. I will definitely be avoiding processed foods and have been for the last few months. Thank you for your response and I will listen to my body as you have said, it is without doubt very important.
    • Is aroy d milk gluten free?I couldnt find an information on its package,it says it doesn't have any additives.It's full fat and sold in a bpa free carton box.Anyone tried it?
    • Thank you so much for your reply, it has really helped! Your feedback on the grieving side has really comforted me to know I am not the only one and that it will get better. I am not always upset and sometimes I feel optimistic but occasionally it really just does get overwhelming especially at the moment if I am eating in a restaurant for the first few times or out with friends and have to be concerned with what I can eat and not just concerned with having fun.  In relation to my diet I have seen a dietitian and got very positive feedback. I love cooking so this has been helpful with changing diet. But, I just find that I run out of recipes and am sometimes eating the same thing on repeat which is agitating. Unfortunately, I currently cannot eat lots of fruit as my stomach responds poorly to it so my dietitian has said to eat only one or two servings a day and build up. I definitely am going to research more recipes and snacks over the next month and really try to get my diet sorted so I can feel more relaxed and better. Thank you again your response it has helped massively just to know there are people out there who understand! Thank you.
  • Upcoming Events