• 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.

No Weight Loss, Undiagnosed, Help!
0

6 posts in this topic

Recommended Posts

janet93    0

I have had strong symptoms of Celiacs for approximately 3 years; and growing up I have always been extremely pale, with sensitive skin (and no allergies) bruise/get nosebleeds easy, lethargy etc. The problem, is that if anything I have gained a fair amout of weight since the age o 18 (I am now 24). I have had my blood done twice and have been negative both times (but in the higher range). Is this common? Both my sister and grandfather are Celiacs who definitely experienced weight loss prior to diagnosis.

I am currently in the early days of a 1 month Gluten Free diet to test myself prior to scheduling a biopsy per my doctor's request as she does not want to perform an intrusive procedure until we are more certain.

Are there lots of other Celiacs out there who experienced no weight loss? Doctors in the past just brushed me off as this is one of the biggest symptoms.

Share this post


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


QueenEe    1

I have had strong symptoms of Celiacs for approximately 3 years; and growing up I have always been extremely pale, with sensitive skin (and no allergies) bruise/get nosebleeds easy, lethargy etc. The problem, is that if anything I have gained a fair amout of weight since the age o 18 (I am now 24). I have had my blood done twice and have been negative both times (but in the higher range). Is this common? Both my sister and grandfather are Celiacs who definitely experienced weight loss prior to diagnosis.

I am currently in the early days of a 1 month Gluten Free diet to test myself prior to scheduling a biopsy per my doctor's request as she does not want to perform an intrusive procedure until we are more certain.

Are there lots of other Celiacs out there who experienced no weight loss? Doctors in the past just brushed me off as this is one of the biggest symptoms.

I also was under the impression that weight loss was a prerequisite to being diagnosed with celiac, but I read somewhere that it isn't even such a prevalent symptom (i wish i remembered where i saw it!). I was diagnosed by my GI based on my experience, not with a biopsy, and I've never experienced the weight loss either. I strongly suspect that my parents both have celiac, and that my grandmother has it as well. If anything, they've all gained weight which just won't budge no matter what due to the disease. My parents will hopefully be checked later this month, so I'll update when I find out if they're positive for Celiac. Good luck with your biopsy!

Share this post


Link to post
Share on other sites

Not sure why your doctor has asked you to go gluten free PRIOR to doing a biopsy as doing so will render the test results inaccurate. Your body could completely heal in one month and your endoscopy will appear negative but you may actually have celiac. You would then need to resume eating gluten (even if it makes you sick) for 3-6 months to even attempt accurate testing. Sounds like your doctor is a bit uninformed.

I'm pretty sure I read somewhere that they are finding that more celiacs are overweight than underweight. Unfortunately, it is taught in med school that weight loss and malnutrition are the big indicators of celiac disease.

My son was diagnosed at age 6 and he is in the 95% for size and was in no way, underweight. I had a positive blood test and positive response to the diet and I have about 50 extra pounds on me . . .

So yes, it is possible.

Cara

Share this post


Link to post
Share on other sites
QueenEe    1

btw, i'm also always pale, and right when my celiac symptoms started I actually gained a few pounds, and just looked bloated all the time. If your doctor won't diagnose just because of the lack of that one symptom (which isn't present in all cases), me thinks it's time to find another doctor who is better versed in celiac symptoms, and all of its possible manifestations.

Share this post


Link to post
Share on other sites

I am by no means an expert, as I am still on the road to diagnosis....but I just wanted to say that decided to 'test my theory' and went gluten free for 1 week, and as a result had to go on a 6 week Gluten Challenge, and essentially eat as much gluten as I could stomach for 6 weeks before my doctor could then do the blood test.

Everything I have read here, and my own experience suggests that it is important to continue eating gluten until a diagnosis is reached.

Right now I am waiting on getting my blood test results, but am still having to eat gluten in case any further tests are needed, if I were to go gluten free now, I could end up having to do another gluten challenge, and delay my diagnosis even further if I need any more tests.

I hope you get some answers soon, good luck.

Share this post


Link to post
Share on other sites
Ads by Google:


QueenEe    1

I am by no means an expert, as I am still on the road to diagnosis....but I just wanted to say that decided to 'test my theory' and went gluten free for 1 week, and as a result had to go on a 6 week Gluten Challenge, and essentially eat as much gluten as I could stomach for 6 weeks before my doctor could then do the blood test.

Everything I have read here, and my own experience suggests that it is important to continue eating gluten until a diagnosis is reached.

Right now I am waiting on getting my blood test results, but am still having to eat gluten in case any further tests are needed, if I were to go gluten free now, I could end up having to do another gluten challenge, and delay my diagnosis even further if I need any more tests.

I hope you get some answers soon, good luck.

Such an important point!!!! Unfortunately, my GP told me to go off of gluten once my blood test came back negative. She meant well, and honestly believed that even though I tested negative, I could have an intolerance to gluten which would be helped with a gluten-free diet. Well, now that I'm off of it, I cant get retested to confirm my GI's diagnosis (she dx'd me just by hearing my symptoms, and how i reacted well to gluten-free), so it's a bit of a pain to deal with that now. Don't go off of gluten until you've done every single possible test that you think you will ever want to do with regard to gluten! It'll make it so much easier for you to get accurate results!

Good luck finding some answers!

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
      107,903
    • Total Posts
      938,578
  • Member Statistics

    • Total Members
      65,815
    • Most Online
      3,093

    Newest Member
    Jmsc4321
    Joined
  • Popular Now

  • Topics

  • Posts

    • Solid advice. Wish that more people would consider that this might be necessary for some and not entirely paranoid. Could very well be airborne, but most likely culprit is something you're eating. That said, baking, construction/open drywall, farms/animal food and bulk/flour aisles in grocery stores are legitimate worries. I was recently having frustrating problems with random but minor flare-ups, and have eliminated almost all packaged food (even gluten-free) for a bit. It has helped tremendously. I hope that perhaps my sensitivity levels will calm down in a few years, but not being itchy and scabby is worth almost any cumbersome restriction. I think for me the problem has largely been to do with the use of oats in many dedicated factories (even gluten-free oats make me very, very sick). I came to this when lodging a complaint/notifying a company that I'd had an issue with one of their GFCO certified products. I figured that mistakes could happen, and could not imagine anything else I'd eaten that day could be a culprit (had only eaten veggies/rice/meat) so I contacted them to report it. Their response made me quite sure that the lot my food came from was fine from a legal/GFCO gluten-free perspective, but revealed that they make all their gluten-free products on the same line - which include granolas, oat flour etc. When I investigated it a bit more, I realized that many of the gluten-free products that I suspected were causing me problems (but had no real basis for why) were all made by companies that also make lots of gluten-free oat products. Previously, I had only avoided gluten-free products that contained oats as an explicit ingredient, and had never considered that the residues from gluten-free oats could be problematic. Unfortunately, now that gluten-free oats have been legalized in Canada, it is very difficult to find companies that do not use them in some capacity, which is why I axed most of the processed gluten-free stuff. Presumably, because the oats are considered gluten-free, there is no reason to clean the line or employ any allergen food safety practices from the company's perspective. While this may not be a concern outside of those who are super sensitive, it might worth considering if you are still having problems or have a known issue with oats. At the very least, avoiding most processed gluten-free foods (breads/flours/pastas/baked goods) seems to have helped me a lot, even if minor contamination with oats is not the true culprit. I would vouch for mostly sticking with rice, dry beans, root veggies and fresh corn (from the cob) as complex carbohydrate sources for a bit, even though it's a bit inconvenient.   
    • Hi everyone! I'm obviously new to the forums, but I'm also new to the idea of celiac/gluten free/etc.  Lemme give you the Cliff Notes version of my journey: 1992: I'm diagnosed with CFS/ME. It sucks and I'm tired and sick all the time. 2014: I'm still tired and sick all the time, so I decide to become a vegetarian. Maybe that'll help, right? I began getting deathly ill when I ate. Vomiting and diarrhea, everything I eat seems to be a problem.  I go to a doctor who runs a million tests. Nothing turns up. In among those tests is a celiac panel which has this result: no antibody detected and no serological evidence of celiac disease. No cause is ever found. I continue to suffer. Later in 2014: I notice that my stomach issues are triggered every time I eat a raw vegetable. I can eat bread or pasta no problem. Fake chicken? Great. Have a salad? I'm dying. This is a problem, as I'm a vegetarian. I nix the fresh veggies and continue to live my life. 2015: I'm diagnosed with Fibromyalgia. I realize that the problem with vegetables is worse than I thought. I can no longer eat cooked spinach, can't have lettuce on my sandwich, and stealing a single slice of cucumber set my stomach on edge for days. I'm becoming hypersensitive to veggies in food and protecting myself from their evil influence; my stomach thanks me. 2017: After a relative peaceful period, the stomach issues are back, worse. So I go to a new doctor (I've moved) and he recommends a colonoscopy and EGD (no labs). This was done yesterday. The full results will of course have to wait for the biopsies to be examined, but apparently there is scalloping "through the entire duodenum".  Doc told my partner that he believes I have celiac and discharged me with orders to go gluten free. Now I'm sitting here alternately considering drinking alone in the dark and throwing things--I guess I'm wavering between the stages of depression and anger on my trip through grief for my lost favorite foods. But here's where the confusion comes in...everything I'm seeing says that I should give up bread and eat more veggies, but veggies make me sick. Does anyone else have this reaction to vegetables? Meanwhile I'm thinking back to the labs done in 2014 and wondering if its possible to have a negative test and still be positive for celiac? Also, what actually happens if you DON'T go gluten free?
    • Hi Guys, I just thought of giving update on my case. I finally got my EGD done and unfortunately, the conclusion is I have Celiac. There was Villus atrophy and presence of Inflammatory Cells, looks like the atrophy of Villi isn't that worse yet, but of course, I need to get on strict gluten free diet right away. I am planning to see a Dietitian next week to have a healthy gluten free diet plan. Any suggestions from the experts in here are most welcome and appreciated. Thanks  
    • Hi this is my first time commenting but I just had to. I too get chest tightness. I have had it flare up several times with no answers. I was diagnosed with celiac about 6 months ago and am pretty confident this is a glutening symptom for me. Last month it was so bad... Started with random chest pains for a couple days then chest tightness that last for two weeks. I ended up going to the emergency room ( again) because I started worrying about my heart. Felt like my bra was so tight, bloated belly, trapped gas like pain in chest, swollen lump under sternum and no relief. EKG, chest xray and blood tests showed heart was fine. GI said he didn't think it was GI related. I give up on doctors. I've had this before and I'm sure I will again. It's like inflammation in there or something but it makes you anxious and uncomfortable. I truly hope you are okay and I hope it will give you some comfort to know you aren't the only one with this.
    • While I agree that getting more sleep when ill or stressed is a must, many people can easily get by on 6 hours of sleep a night.  Not everyone needs 8 hours of sleep.  Sleep needs, like the gluten-free diet, is different for everyone.  Nursing school can be very tough so it may be hard to get 8 hours every night.  I think the most important thing is to make sure no gluten is getting into your diet at all so you feel well and can manage your schedule better.  Good luck to you!
  • Upcoming Events