Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Please Help! Am I Confused, Or Have I Been Misdiagnosed On Some Level?


Guest Lore

Recommended Posts

Guest Lore

Hi everyone,

Brace yourself, this is long! But I really need advice! :unsure: I would LOVE some feedback, please!!!! :D

I am new to the site, and thought I could get some feedback on some questions I've had lately.

Basic background on me, leading up to my recent blood test for Celiac:

I am 23 years old, and have been struggling with "stomach issues" since I can remember. There have been many reasons thrown at me for the constant stomach pain while growing up: stress, picky eater, anxiety about traveling, a need for routine, lactose intolerance, IBS, ulcers... the list goes on. A few years ago, after I went from 120 lbs to 100 lbs over the course of a summer, my Endocrinologist did some blood work and suggested that I may have Celiac Disease. Apparently, the antibody he tested for is no longer a factor in determining Celiac, so I have since been tested.

However, since I was first "diagnosed" by the Endocrinologist, I've maintained a gluten-free diet, and my health and overall life has dramatically improved. I no longer have cystic acne, I feel happier, and am having less stomach pain, at least the pain that I had been having my entire life. For a while that is. In the past year, since being gluten-free, I've approached many more obstacles. Even when I am almost positive that I've eaten gluten-free all day, by the end of the evening my stomach is so bloated that I look like I'm 5 months pregnant. I've been keeping a food diary, and have noticed that a few things tend to bother me when I add them back into my diet:

-eggs

-dairy

-almonds (recently I have been avoiding all nuts)

-corn seems to be fine, but POPPED corn tends to make my stomach severely bloated

-carrots

I do eat tomatoes all the time, and since removing these things from my diet mentioned above, I'm still getting the bloated stomach. So I am wondering if the tomatoes have something to do with it as well.

On top of these additional food "allergies", I've experience many other things that I've read are attributed to Celiac Disease:

-loss of tooth enamel (I just visited the dentist last week, and in the past year I have developed SEVEN potential cavities NOT due to unhealthy gums or brushing habits- I brush and floss three times a day- but due to loss of enamel)

-stomach bloating on a regular basis

-irregularity

-increased PMS

-kidney stones

-dry, flaking patches of skin around my eyes and temples (not sure if this is related, but something I've noticed)

-I am CONSTANTLY cold. My fingernails turn blue/purple when I feel cold, and once and a while one or two of my fingers will go numb. I've read that this can be attributed to Reynaud's (sp?) which can be related to Celiac

-Muscle pain: I am an athletic girl who just 6 mos ago could easily touch my toes, and now have trouble doing so without sharp pains

-fatigue, especially after I eat a meal. Adding to previous athletic ability, I used to be able to run and exercise a few times a week, now I feel so tired to even get the motivation to go to the gym.

-HUGE increase in cravings for SUGAR! :P I am always craving candy, chocolate, and sweets.

-joint pain

:(

So, after noting these symptoms for a few months, I decided to see a GI Specialist @ UCLA Medical Center to "update" my diagnosis and speak with someone about these further developed symptoms and try to get a grasp on exactly what I am dealing with here. After testing me for Celiac, along with the genetic factor, apparently he said that my tests all came back negative.

I am shocked! :o How can i have all of these related symptoms, some so specific, AND feel dramatically better on a gluten-free diet, yet not have Celiac Disease? My dr. said that in rare cases, Celiac does not show up on the standard blood work, and that further testing must be done. HAS THIS HAPPENED TO ANYONE?? :huh: I was almost positive that I had Celiac... I research it daily and it just seemed to fit everything that my body was feeling.

My doctor gave me two options: he said that either 1) I don't have Celiac, but have a gluten allergy, among other food allergies or 2) I can come in for further testing, which would actually consist of me ingesting some sort of gluten and him monitoring the results and doing blood work at the time of ingestion.

Can anyone relate?? If you have a gluten ALLERGY, not Celiac, do you experience the same symptoms? Has anyone been given a negative diagnosis, but later found out that it was incorrect?

Any thoughts you can offer would be great... I feel so lost. :blink:

Thank You! ;)

~Lore


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



Celiac.com Sponsor (A8-M):



gfgypsyqueen Enthusiast

Hi,

First, it is late and I think I am following you clearly. Get a copy of your test results and people on the site can help you a little better knowing the exact tests and results :D

If you have been eating gluten free, any blood work and celiac testing results will NOT be accurate. While eating Gluten free the damage to your intestines is healing or healed by now - that is why you were feeling better. So the recent blood work will show "Negative" for the disease.

As for gene testing, I belive they can only test for two of the genes. But others know more about this.

I had negative blood work but positive biopsy for Celiacs. My toddler showed inconclusive to the biopsy. Both of us react with 100% certainty to Gluten foods. So we are CEliacs. Mine from the biopsy and the baby from the reaction to the food. Many people are unable to get the full biopsy done or for one reason or another try this gluten-free diet and feel much better on it. Be aware, that some biopsy diagnosed people do not have the physical signs of a reaction after eating gluten, their intestines are being damaged by consuming gluten.

You can have an allergy to wheat AND be a Celiac. They are two very different items.

Dairy frequently is a problem food for Celiacs. For some it is only during the recovery stage. For others it is a permanent problem. Look at the gluten-free/CF diet. CF is casein free (dairy free). Most people recommend eating gluten-free/CF for the first several months until you heal.

As for the other foods that are bothering you. Please see an allergist to get tested for food allergies. At a minimum, since you mentioned you avoid nuts, keep some Benedryl around and look into the signs of serious allergic reactions - anaphylactic allergies to nut are more common than you think and they can be deadly. (One kid in peanut /tree nut anaphylactic so this makes me concerned :( )

Look into "Nightshades" they are the tomatoes and potatoes and others. Many of us have intolerances to them too.

Now you sound like you have had a similar history with Drs to me and many others. Decades of problems and the Drs never seem to help. I have stories that go back to me being an infant and being very sick and I was finally diagnosed in my 30's. Unfortunaetly after so many years of bad and unhelpful Drs I really grill a Dr before I believe whta they tell me and they must explain in detail all testing etc. Even after my biopsy, Drs ask me in shock how I know that I have Celiacs and what do I eat?

As for your most recent Dr, PLEASE GET A NEW GI DR!!!! No Celiac on this board would follow that DRs answer of eat Gluten in the office and he'll take blood work. That will not do any good. You must eat gluten daily for months for a decent testing. You sound like you have Celiacs and you respond well to the diet and you have definate responses to gluten - that means you are a Celiac. Consider Gluten rat poisen from now on :P . What you need is a better GI who has current Celiac patients - What do you live and get a recommendation from the board members.

Also, you probably are having a big problem with hidden gluten and unknown contamination. That could be the source of a lot of your discomfort and pain. BTW, I have never had a good result at a dietician. Post more questions and start researching. As the Dr who performed my biopsy told me - I'll know far more about this diet in a few months than he will ever know. His job is to spot the signs and to diagnois. He cannot keep up with the diet if he does not live it.

Good luck and feel free to ask for more info or PM.

-AnnMarie

lizard00 Enthusiast

I have to completely agree with the previous poster. I was tested after close to a month of being gluten-free, and my results were negative for celiac. But... I know that I gluten is toxic for me. So, whatever they want to call it; intolerance or celiac (which may be one in the same), I have it. I react to it. And trust me, I've purposely glutened myself twice just to make sure. And then there are the accidentals as we learn. So, I do know for sure that gluten is bad for me, and I don't need a blood test to tell me so.

As for your GI, I agree on that too. Once you stop gluten, it takes months of consuming gluten again to even have a possiblity of the test being accurate. And that's not promising, as the tests have a tendency to give false negatives. There definitely are others on this forum who have been through the same things, hopefully they'll see this thread and reply to you too. THis is a great place to get answers.

It is also a good idea to get a copy of your results, if possible. Many drs (sadly) don't know how to interpret the results, or if the number isn't quite high enough, they'll tell you negative. Though you may actually have the antibodies present... so definitely get that and post it.

It's late where I am too... off to bed. Hope that I made some sense! :huh:

Nancym Enthusiast

You might want to read some of the articles by Dr. Lewey. He writes a lot about multiple food intolerances.

Open Original Shared Link

It won't be possible to get this diagnosed by a typical GI doctor, they're just not informed.

pixiegirl Enthusiast

Since you've been gluten free for a while, of course you will test negative for it. A year after I went gluten free I tested negative for it and I had a biopsy (for other GI issues) and that was negative for Celiac. Of course my GI doctor knows I have celiac but she said I was doing really well with gluten-free since a year after all tests were good. So that's not surprising.

Many of us seem to have other food sensitivities, it took me a few years after I went gluten-free, with the help of an allergist and and elimination diet to figure out what I can't eat, some foods that I can eat in small amounts, and which are fine.

After being on this list for quite a while I've come to realize that Celiac is a journey and it usually takes a while. I just have been able to maintain the attitude that its a constantly interesting one and I keep getting more healthy with every day.

Good Luck, Susan

Guest Lore
Since you've been gluten free for a while, of course you will test negative for it. A year after I went gluten free I tested negative for it and I had a biopsy (for other GI issues) and that was negative for Celiac. Of course my GI doctor knows I have celiac but she said I was doing really well with gluten-free since a year after all tests were good. So that's not surprising.

Many of us seem to have other food sensitivities, it took me a few years after I went gluten-free, with the help of an allergist and and elimination diet to figure out what I can't eat, some foods that I can eat in small amounts, and which are fine.

After being on this list for quite a while I've come to realize that Celiac is a journey and it usually takes a while. I just have been able to maintain the attitude that its a constantly interesting one and I keep getting more healthy with every day.

Good Luck, Susan

Thanks, Susan! And everyone else too, I really appreciate it!

My only concern is that if my doctor diagnoses me "negative", I won't get the right guidance as to what other testing needs to be done- bone density, etc. If I'm not mistaken, those tests should be ordered by your Dr. in order to be covered by insurance, etc. I also think getting a food allergy test is necessary- starting today I am eliminating apples, corn, eggs, and the "nightshades" mentioned above (potato, tomato, peppers, eggplant, cherries). However, what is your advice on the next step to take after a negative diagnosis, clearly due to the fact that I've been eating gluten-free for months now?

~ Lore

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SB04 replied to SB04's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      False tTG3 Test?

    2. - trents replied to SB04's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      False tTG3 Test?

    3. - SB04 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      False tTG3 Test?

    4. - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      18

      Does anyone here also have Afib

    5. - knitty kitty replied to ohmichael's topic in Super Sensitive People
      16

      Curious if I should quit my job


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,715
    • Most Online (within 30 mins)
      7,748

    C Weav
    Newest Member
    C Weav
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • SB04
      Thanks! I don't think it was a total IGA test, it was called "Array 3X - Wheat/Gluten Proteome Reactivity & Autoimmunity" and it tested a bunch of wheat proteins and transglutaminase for both IgG and IGAs.  
    • trents
      Welcome to the forum, @SB04! Let's cut to the chase. Did they run a tTG-IGA and a total IGA? Total IGA goes by many names but it checks for IGA deficiency. If you are IGA deficient, IGA test scores will be artificially low and it can result in false negatives. The tTG-IGA is the centerpiece of celiac disease antibody testing.  Dermatitis herpetiformis is the epidermal expression of celiac disease. Most who have dermatitis herpetiformis also have damage happening to the small bowel lining as well but a small percentage do not. But dermatitis herpetiformis has a characteristic appearance to it, with the rash bumps having pustules in the center. It is also accompanied by a very uncomfortable itch. From what you describe, your rash doesn't sound like dermatitis herpetiformis. The IGG antibody tests are not quite as specific for celiac disease as are the IGA tests but they aren't terrible either. This may be helpful:   
    • SB04
      Hi all, about a year ago I had some blood tests done through a naturopath because I had constant hives and no idea why. They would go away for a few days with an antihistamine medicine but always come right back. Anyways, she did an igg test (which i now know is terribly unreliable) and it was pointing to gluten sensitivity. there was another test too, that tested for wheat iggs, igas and several other things, among which were Transglutaminases. The only one that came up as high for me was the tTG3 igg result, which shows an autoimmune response in the skin, commonly dermatitis herpetiformis in celiac patients. I was told it was gluten causing it but not celiac. Fast forward to now, I still have hives, I've been gluten free (although I have no reation to gluten when I accidentally have it), and I've been doing research to try and figure out what is wrong. I've heard that those initial igg tests are unreliable, and that maybe gluten isn't the issue, but from what I've read it sounds like the Transglutaminase tests are very reliable? I'm wondering if I somehow got a false positive, because I definitely don't have dermatitis herpetiformis or any typical celiac rashes. Has anyone had a similar experience?
    • knitty kitty
      I know I'm late to the party, but I thought these articles are very interesting.   Doctors don't recognize vitamin deficiency symptoms.   Thiamine deficiency is linked to Long haulers syndrome, too. I had palpitations that only resolved with thiamine Vitamin B 1 supplementation.   Association of vitamin B1 with cardiovascular diseases, all-cause and cardiovascular mortality in US adults https://pmc.ncbi.nlm.nih.gov/articles/PMC10502219/   Vicious cycle of vitamin B1 insufficiency and heart failure in cardiology outpatients https://pmc.ncbi.nlm.nih.gov/articles/PMC11579856/   Micronutrient deficiencies and new-onset atrial fibrillation in a community-based cohort: data from PREVEND https://pmc.ncbi.nlm.nih.gov/articles/PMC11772465/   Spontaneous Recovery of Isolated Advanced Heart Block in Patient with Celiac Disease by Starting a Strict Gluten Free Diet: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC10482138/   The Efficacy of Vitamins in the Prevention and Treatment of Cardiovascular Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC11432297/   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/#:~:text=Benfotiamine (Fig.,]%2C [62]].   Recovering from Long Covid with Thiamine https://hormonesmatter.com/recovering-from-long-covid-with-thiamine/ https://hormonesmatter.com/covid-19-thiamine-interview-with-dr-derrick-lonsdale/
    • knitty kitty
      @ohmichael, Have you tried contacting your state's Employment Services?   There should be job opportunities and training programs especially for previous service members and veterans.   Look into trade schools.  Some offer training programs which provide scholarships and housing, and possible employment after completion.  Some scholarships are funded by employers looking for specifically trained employees. Choose a career path in something you enjoy doing.   I agree with @Scott Adams.  Play your cards close to your chest.  Get your ducks in a row before discussing leaving the gluten aisle where you work now.  Managers can and will fire you really easily, like Scott said.   Prayers and Best Wishes sent.  Keep us posted on your progress!
×
×
  • Create New...