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

Hey Everyone.. New Here.

beachymama

Recommended Posts

beachymama Newbie
beachymama
Posted

Hi everyone!

I'm new here. :) I apologize if this ends up being muddled wall-of-text, I just have so much to say!

I am a 33 year old female, struck with "tummy troubles" sometime around when I started high school. I managed to get through most days by simply not eating until I was safely home and near my bathroom. My parents took me to a gastro, who did (I believe, this was a long time ago) an upper GI only. I had no lower GI or colonoscopy. The gastro prescribed something called Levbid, which I ceased taking shortly thereafter because it didn't help.

From my teen years until now, I just managed to do the above -- I didn't eat. I didn't eat while I was at school, I didn't eat when I worked a full time job, I didn't eat when I had to leave the house. Yet, somehow I'm 5'6" and 230 lbs.

I did have my gallbladder out in 2008. They had done an ultrasound which showed no problems at all with the gallbladder. They removed it anyway and found it was completely full of gallstones which hadn't shown up at all on the images. When I tell people I had my gallbladder out, they assume my urgent bathroom habits are a side effect of that. Having my gallbladder out did nothing but ease the excruciating pain I was getting. I just chalked everything up to miserable untreatable IBS.

I never knew much about celiac until my BFF said my symptoms sounded a lot like it. I always assumed celiac was something like a nut allergy or something - consume gluten and you end up in the ER with anaphalaxis. Not so much, it seems. I looked at the symptoms of celiac, and I have MANY even beyond the bathroom issues -- iron deficient anemia, ADHD, tooth problems (this could be a whole other ranting post in itself about my tooth issues), nosebleeds, migraines, easy bruising, insomnia, it goes on and on.

I went to my regular doctor back in March in hopes of having a celiac panel done while I was having my normal yearly cholesterol and other fun tests done. I received a letter in the mail saying that my results were "within normal limits" and I decided to see a gastro for further testing.

I will spare you the nightmare which has become the gastro, and suffice to say I will be switching doctors as soon as I get the results of my latest genetic testing (which the lab screwed up TWICE) My father, who has ulcerative colitis, sees a wonderful doctor I should have seen to begin with.

So, it seems that the "comprehensive celiac panel" only consisted of these two results:

IgA, Serum --- 146 --- 88-410

tTG IgA AUTOAb --- 4 --- <20

Shouldn't there have been more to it?

I don't know what I'm hoping for.. I just want answers. I'm tired of being sick, I'm tired of not being able to do the stuff I want to do.

Thanks for any advice/insight/anything. :)

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

Celiac.com Sponsor (A8-M):


beachbirdie Contributor
beachbirdie
Posted

Hi everyone!

I'm new here. :) I apologize if this ends up being muddled wall-of-text, I just have so much to say!

So, it seems that the "comprehensive celiac panel" only consisted of these two results:

IgA, Serum --- 146 --- 88-410

tTG IgA AUTOAb --- 4 --- <20

Shouldn't there have been more to it?

I don't know what I'm hoping for.. I just want answers. I'm tired of being sick, I'm tired of not being able to do the stuff I want to do.

Thanks for any advice/insight/anything. :)

Hi beachymama, welcome to the forum!

Don't apologize for a long explanatory post, it's perfectly fine!

As for testing, you are correct. They did not do a very complete job of testing. In addition to what they tested, they should have done:

Deamidated gliadin peptides, both IgA and IgG version

anti-EMA (anti-endomysial antibodies)

Some people only test positive on ONE of the types, and if they don't test all, they might miss a diagnosis.

You certainly have a lot of symptoms that COULD be celiac related, hopefully your new doc will help sort things out.

Be sure you get paper copies of all your labwork as the results come in, and share them if you are comfortable sharing. Doctors so often will say "normal" when you aren't really in a good place lab-wise. There are quite a few experienced people here who can give educated insight on your tests.

You've come to a great place for support and information. Folks here are very friendly and very helpful!

MitziG Enthusiast
MitziG
Posted

Well, the panel is typical, as in it only included one actual celiac test. Though they at least tested total IGA which is important, cuz if that is low, it negates the other test anyway.

You still need:

Ttg IGG

Deamidated Gluten Peptides

Endomysial Antibodies

Do not be surprised if those are negative too though. Celiac is notorious for false negatives. And then of course, gluten intolerance, which is far more common than celiac, can not be tested for at all.

The gallbladder is a big red flag for celiac- google the connection.

Weight gain is as well, but most drs do not know this and will completely dismiss the possibility of celiac in an overweight person.

For now, keep eating gluten until all testing, including biopsy is done. Then go on a strict gluten-free diet and find out for yourself if gluten is your problem!

beachymama Newbie
beachymama
Posted
  • Author

Thank you for the warm welcome and information!

I'm very excited about seeing my new doctor. My dad talked to him on Tuesday (he had an appointment scheduled for his own stuff) and the doc was appalled at the way I was being jerked around by my current doctor. He sent home some helpful handouts for me and said I should call to set up an appointment immediately before my current doc does "any more damage" ! I was just tickled that he not only knew what celiac was, but is apparently a pretty big deal around these parts with research and stuff.

I'm still waiting on my genetic test to come back. They said it will take about 10 days to get the results and I'm so not patient.

If the genetic stuff comes back as a screaming positive, does this mean I should have my children tested as well? I have 3 - ages 12, 8 & 6. My 12 year old had awful GERD as a baby, the 8 year old is ADHD like me, and the 6 year old went through several years of unexplained high fevers which they finally just diagnosed as periodic fever syndrome (PFAPA) because that's what they dub it when every test in the book comes back negative. It blows my mind that perhaps my ADHD child could just be having a gluten reaction and could possibly get off his stimulant meds. None of them show any kind of tummy symptoms like I have, but my BFF is celiac and hers manifested as terrible migraines - so I'm guessing anything is possible.

ETA: My paternal grandfather died from lymphoma, which is another reason the new doctor is all "get in here now" with me. I never even realized celiac could cause cancer. :unsure:

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. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,547
    • Most Online (within 30 mins)
      7,748
    GSward
    Newest Member
    GSward
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.