• 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.

Frustrated - Tired Of Being Dismissed. Waiting On Biopsy Results.
0

1 post in this topic

A little history...I am 39 years old. I've had belly issues for as long as I can remember. I was diagnosed with irritable bowel syndrome in my early 20's.

My symptoms:

Nausea (I don't always feel awful, but I never feel good. This is daily. Something I unfortunately considered normal for me. It's all I've known for over 20-25 years).

Abdominal cramping

Constipation and diarrhea (less C and more D)

Stool contains a lot of mucous, floats (fatty stool?)

Frequent headaches

Fatigue/sleepiness

Numb/tingly hands and feet (most intense after eating)

Brain fog (feels like "medicine head")

I had my gallbladder removed three years ago. I have another autoimmune disorder that caused six miscarriages (I now am the mom to three nine year olds as a result of INVITRO. They administered IVIG and heparin to sustain pregnancy).

My numb/tingly hands started just a few months before I had my gallbladder removed. I saw a doctor at that time to discuss the numbness (I had an MRI to rule out MS and stroke, bloodwork and EKG to rule out heart issues). When that came out all normal, he said he didn't know what else could be causing it. He said the fatigue was due to being the mom of three kids. This kind of ticked me off. I get that it's tiring, but there is a difference between being exhausted from life, and SLEEPY all the time. My headaches he attributed to three children as well. Sigh. My constipation and diarrhea due to ibs, and for my nausea, suggested I give up dairy to see if I was possibly lactose intolerant. I gave it up for about two weeks. No change. Perhaps I didn't give it long enough.

I was so happy to have MS ruled out, I let it go. I blame myself for not being proactive in getting to the bottom of what was wrong with me. Nausea and these weird numb hands and feet were my new normal. I'm not the person I used to be. I used to be fun, cheerful. I feel like I'm just this lump of grumpy because I never feel good. I guess I could add irritability as a symptom, but I feel of course I'm irritable, I feel like crap!

Zoom to now. I've gained 30 pounds the past two years. I can't lose weight. No matter what I eat, how much I exercise, the scale doesn't move. If it does, it moves up. I was playing around online seeing what I could do, and why I wasn't losing. It kept leading me to gluten and celiac. I read the symptoms...nausea, headaches, etc are symptoms to almost all ailments it seems. Then I got to the numbness and miscarriages...and a lightbulb went off.

I saw a new doc :). She said it could be thyroid, vitamin B deficiency, or celiac. Thyroid and VB came back normal. She did one blood test for celiac (iGa?). It came back negative, but she said it is not uncommon for false negatives, so she recommend I go in for a biopsy to confirm or rule it out. I had my biopsy this morning. I'm frustrated because the GI doc seemed totally aggravated that I was having a biopsy done. He said that since my bloodwork came back negative, I do NOT have celiac. He said the numbness has nothing to do with celiac...unless of course I was malnourished, which I didn't appear to be (yes, I am overweight), and my bloodwork didn't reflect that.

He said when it comes back negative (not if, when), we can meet again to look into getting meds to help with my IBS. Good news is that even though he gave me attitude, he did perform the biopsy. I should get results early next week. I told him that if it turns out negative, I still plan to eliminate gluten to see if that helps rid me of my symptoms. He looked at me like I was out of my kind and said dryly, "if you don't have celiac, you don't have problems with gluten." Fine. Whatever. I didn't argue with him. What does it hurt to try? I'm happy I got my biopsy. I'm hoping it gives me answers.

If any of this sounds like your experience. If you could give me any advice. I really appreciate it!

0

Share this post


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


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
      106,422
    • Total Posts
      930,476
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • REALLY odd call out here, I am attending a anime convention called A-Fest in Dallas come August, I need someone to split the room with it who is gluten-free. I take extra precautions, I COOK all the food, bring only CERTIFIED foods into the room, The room will be Gluten Free, Corn Free, Dairy Free, Peanut Free. I am trying to find someone to split the room cost with, that would be safe to be around I CAN NOT AFFORD to get sick at one of these things, it is one of my few joys left in life and get very paranoid around them. So I need someone who is also gluten-free to make sure the room stays safe (YES I have done with with a non celiac with the rules down and well stuff happens so not chancing it). Room split is food coverage comes to $400 if it is just two people.  4 day convention, I will arrange a meal plan around your diet as long as it is free of my allergens. I will also provide various snacks, baked goods, and even stuff to take home with you.   https://animefest.org/ ^Convention info.
    • Hi Jennifer, This thread might have some information that would help you.   Your doctors are pretty lame IMHO.  Perhaps you can find a celiac group in your area that has local meetings for support.  They might also suggest a different doctor who knows how to treat celiac patients.  
    • All the above posts are full of good advice. What I'd like to add is, if you have coeliac disease and continue to eat gluten, you run the risk of other autoimmune diseases in the future as well as osteoporosis, malnutrition and even cancer, so even if you had no symptoms at the beginning, and may also not have any symptoms if you eat gluten (not all coeliacs do), the damage is still being done to your gut and the rest of your body, so please be aware of this.
    • You could possibly try calling the places in Texas and Chicago to see if they can refer you somewhere that does accept your insurance. Oh good luck to you!
    • Hi Jennifer and welcome CyclingLady has given you some good advice above. You want certainty and that's entirely understandable. Go back to your doctors and explain that you need to know a little more and hopefully they will engage positively with you. If they don't, then do pursue a second opinion.  I just wanted to address your last paragraph quoted above. The problem with celiac, or in my case non celiac gluten sensitivity, is that it presents or doesn't present in so many different ways. It can do hidden damage which may take many years to become apparent. It can impact in ways which are incredibly difficult to recognise or isolate.  I am 'lucky' in that the way that gluten impacts on me is far worse than any mental or social isolation brought upon by the diet, so motivation is easy for me, even without the certainty of a celiac diagnosis, there really is no alternative, I don't think I'd last long on a gluten diet now. But I can well understand how difficult it may be to stay honest on the diet if you don't have any symptoms to deal with. The diet can be isolating, there does become a distance between you and 'normal' people. Who would want to deal with all that if they didn't have to? If you aren't satisfied with your doctors  responses and choose to go back onto gluten I suggest you find another doctor and go back into the diagnostic process and properly exclude celiac, including a scope. Otherwise you could be taking a big risk with yr long term health. You may find that this process supplies you with an answer as if your diagnosis was correct your response to the reintroduction of gluten may surprise you, or not of course! best of luck!     
  • Upcoming Events