Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What If I Dont Get The Diagnosis?...

HelpinOhio

Recommended Posts

HelpinOhio Explorer
HelpinOhio
Posted

If you want to know my whole story look at the my other threads and the one in "coping with" discussion about losing my childhood.

Anyways, I came to the conclusion that I do have Celiac Disease. My mom has Celiac Disease and I have many symptoms of it, Ive been researching what is wrong with me for 1 1/2 years now. I got the blood test twice about a year ago, and both times I had been almost all gluten free for a few months prior. They came back negative.

I have been eating gluten normally for about 8 months now, and added a +2-4 pieces of bread a day for the past 5 weeks. I felt worse than ever. I went to the GI and got the blood test done about 5 days ago. The results should be back within 2 weeks. I also have an upper endoscopy scheduled for about 3 weeks from now.

Now, Im pretty sure that I do have Celiac Disease, but what if the diagnosis comes back negative?

Or even worse, what if I dont have Celiac Disease at all?

Then I would be all the way back at square 1 after having a mystery illness ruin my life for the past 7 years, including the majority of my school years and childhood. Im just nervous now and having my doubts. Most of all I feel like I need the positive diagnosis for anyone to believe me. If the diagnosis comes back positive and all I have is Celiac for sure, everything will be great. But if it doesnt...I dont know what I will do. Any thoughts? suggestions? comments?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


serenity0607 Newbie
serenity0607
Posted

you sound like me this is somethign i have delt with for about 3 years now and it just seems that i know and am fairly confident that this is celiacs but to me it's like the negative results would make me feel horrible and well for anyone to belive the fact and not have a positive would make me feel horrible!! but i'm trying to keep my hopes up !!! and you keep your hopes up too!!!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

You could have gluten intolerance which wouldn't show up on a bloodtest. If you don't like the answers your doctor gives you go to a different kind of doctor. I went to an allergist who was much more informed about Celiac and gluten intolerance than my primary doctor. She diagnosed me with gluten intolerance after my primary doctor blew me off when my Celiac panel came back negative.

KristinNicole Newbie
KristinNicole
Posted

I very much understand your concerns. For me . Celiac is pretty much my final attempt to really find out what is wrong with me. I have been to probably about 7 different types of specialists and a trillion doctors , I have had many many many viles of blood taken for pretty much every test in the book, I have gone through MRIs, CT scans, EKGs, EEGs, you name it I have most likely had it and everytime I get dissapointed usually to tears. Appearently according to all these tests.. I am the picture of perfect health. So I know how dissapointing that is and to be honest I am so used to it now that when my gastro tells me everything came back normal again for the tests for celiac. I will just feel numb. That is all I feel now is numb. I used to be upset and dissapointed and mad.. now ..I dont even know how to describe it. However atleast I am not alone here.

Good luck to you.. let us know when you find out what happens. Take care.

quietmorning01 Explorer
quietmorning01
Posted
If you want to know my whole story look at the my other threads and the one in "coping with" discussion about losing my childhood.

Anyways, I came to the conclusion that I do have Celiac Disease. My mom has Celiac Disease and I have many symptoms of it, Ive been researching what is wrong with me for 1 1/2 years now. I got the blood test twice about a year ago, and both times I had been almost all gluten free for a few months prior. They came back negative.

I have been eating gluten normally for about 8 months now, and added a +2-4 pieces of bread a day for the past 5 weeks. I felt worse than ever. I went to the GI and got the blood test done about 5 days ago. The results should be back within 2 weeks. I also have an upper endoscopy scheduled for about 3 weeks from now.

Now, Im pretty sure that I do have Celiac Disease, but what if the diagnosis comes back negative?

Or even worse, what if I dont have Celiac Disease at all?

Then I would be all the way back at square 1 after having a mystery illness ruin my life for the past 7 years, including the majority of my school years and childhood. Im just nervous now and having my doubts. Most of all I feel like I need the positive diagnosis for anyone to believe me. If the diagnosis comes back positive and all I have is Celiac for sure, everything will be great. But if it doesnt...I dont know what I will do. Any thoughts? suggestions? comments?

I think I'm wrestling with the same thing right now. I can make choices for myself to improve my health if I want to - but there's this issue of "Well, were you diagnosed for sure, yet? Is it definitive?" I have made the change in my diet, it's a noticable improvement, but I've been under cloudy diagnosises before, and it's hard. Not only does my support system find it difficult to support me in it, but other doctors do as well.

I think if my tests come out negative, I'm going to choose to stay on the gluten free diet, see an allergy specialist - and make it a personal choice not a medical choice. I think there's a difference, and people can choose to support me in it or not, it's up to them, but it would be up to them regardless. . . people go vegan every day.

So, I think that's where I'm at with it. . .

ang1e0251 Contributor
ang1e0251
Posted

There are three seperate problems with gluten: celiac disease, gluten intolerance or wheat allergy. There is no way to test for gluten intolerance. For that, your body has to tell you what it needs. If your tests come back negative, that's disapointing but not the end of the world. The remedy for gluten intolerance is the same for celiac disease; the GFD. You do not need a diagnosis for it, you don't need a dr's permission for it, you don't need a note from your Mommy, you only to make up your mind and do it

If you go on the GFD, keep a food journal and note your symptoms with it. This will be helpful with your dr's if you feel the need to discuss it further with them. I've heard of many allergists accepting this type of dietary response as proof enough of GI. I am self diagnosed. My dr doesn't completely believe me but I don't really care. I don't care if no one believes me. I feel better than I have in 30 years. Conditions that seem unrelated to diet have cleared up a great deal or have gone away completely. I listen to what my body tells me now. It isn't important to me if someone says such and such a study says this food is safe for you, if I react to it, I don't eat it.

Seek your own good health and stick to your guns. You know what hurts you and what gives you relief. Follow your gut!

samcarter Contributor
samcarter
Posted

I asked my GP to do a celiac blood test on me--he wouldn't do the full panel, but did the EMA, which came back negative. So obviously he wasn't going to be open to the idea of doing a biopsy on me. He was very dismissive about my suspicions that gluten was causing me problems.

I had a very positive response to a gluten free diet, and as far as my husband (who is a scientist) was concerned, that was enough to convince him that I have a problem with gluten. As others have pointed out, gluten intolerance won't show up on a blood test, but it is a real health issue.

Also, because you have an immediate family member with celiac, you may well have the gene for celiac. Just because it's not "on" now, doesn't mean it can't be turned on at some point in your life.

I don't have a diagnosis, but I live as if I do have one. And I'm healthier for it.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Pegleg84 Collaborator
Pegleg84
Posted

I think if you feel better on the GFD, then stick to it. My mother, sister, and several of my family members have celiac and gluten intolerance, and I've been suffering increasing symptoms for the past couple years. of course, my bloodwork has come back negative twice, which at first made me wonder if it was indeed all in my head (which really does make you feel worse about it!). A few weeks ago, after feeling horrible after I ate anything, I decided to start going gluten-free, and I feel so much better, so something is definitely up.

so, diagnosis or no, if you feel better not eating gluten, then don't.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.