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

I'm Not Convinced By My Test Results.


Brittanyadell

Recommended Posts

Brittanyadell Newbie

Okay, so I am a 17 year old girl who has had one blood test to see if I was celiac or had any deficiencies in my nutrient, vitamin and mineral levels. This was about 4 or 5 months ago now... All the tests came back NEGATIVE.

I have been severely lactose intolerant since I was a baby, and remember growing up with a constant stomach ache or upset stomach after eating virtually anything. From ice cream, to pasta, to cake, I was constantly in the washroom with terrible upset stomachs. When I was 11, I began getting severe ocular migraines (where your vision becomes swirly for about 30 mins, but rarely any pain), my eye doctor and family doctor told me that there's no way to determine the cause of these "migraines" but often times food can be associated with them. Around age 13, I was stricken with the most severe stomach aches I have ever gotten. They started out as just a regular stomach ache, I apologize if this is a little TMI, then the pain would increase and increase until my stomach would make this noise (similar to blowing bubbles through a straw into a little bit of water) and this would happen over and over again. It would send my body into a sort of opposite vomiting spell. My bowel movements were often times watery, fatty (kinda with white mucus looking stuff on it, sometimes with undigested food). One minute okay, the next having increasing pain, then severe diarrhoea. I was prescribed Zantax and was told I had IBS and to avoid acidic foods.

When I was 15, I began exercising and eating considerably less processed foods. I ended up dropping from my unhealthy weight of 153 down to my current weight of 130. My weight loss has happened very naturally, over the period of almost 2 years, with only healthy changes as the cause. This helped my stomach very, very much, but I still had many negative symptoms.

In February 2012, I made the decision to stop consuming dairy. I replaced nearly every dairy product in my diet with a soy alternative, resulting in what I considered a severe hormone imbalance. I missed my for the months of February and March, had severely oily hair and skin, and put on a fairly large amount of water weight. I then opted for a more soy-free version of my dairy-free diet - I know use almond milk, and just don't eat any kind of cheese or yogurt or anything like that.

I began training for a half marathon in the spring, began training with a trainer and she recommended I try cutting out gluten to see if that helped the remainder of my still frequent stomach troubles. I did as she said and began a mainly gluten-free diet in July 2012. I noticed it helped very much. My diet consists mainly of fruits, veggies and protein. Occasionally the odd piece of Udi's bread or a gluten-free, DF cookie.

However, I really just want conformation. I had a blood test taken as I said, that came back negative, but the severity that I get sick when I consume something containing gluten or dairy is unbelievable. Is it possible to have celiac disease and have your blood test come back negative? If I go back to my doctor, he will think I'm crazy, but I just am not convinced that something more serious isn't going on.

I am not currently following a 100% gluten-free diet, and haven't been having the most happy insides lately. I'm sorry this is so long, I just wanted to get my story clear in hopes that someone could help or relate or lend me a little bit of advice. I'll be starting university next fall, or travelling am nervous that without a clear diagnosis that I could be putting myself at risk.

The foods I have determined that I am extremely sensitive to are: Dairy (I'm for sure lactose intolerant), Gluten (suspected intolerance or maybe celiac disease?), Peanuts (severe stomach ache from them), Raw Carrots (severe stomach ache and gas), and I'm very sensitive to sugars (I try very hard to avoid any artificial sweeteners, but even natural sugars cause my insides to act up). *I also have suffered from severe eczema and often times break outs around the times I consume gluten.. I don't know if that could have an effect.

Thank you so much for reading this essay of a post,

Brittany


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



Celiac.com Sponsor (A8-M):



DavinaRN Explorer

My blood work was negative, but I responded so great to not eating it. I could tell after one meal--I didn't feel more sick after eating than before I ate. Luckily my endocrinologist agreed that even if the blood work was negative, but having a positive dietary response that going gluten free would not hurt me. She said it isn't like a diagnosis changes the treatment plan. Celiac, gluten sensitivity/intolerance or wheat allergy are all treated by not eating it.

rosetapper23 Explorer

You may not have been eating enough gluten to have a positive celiac test. No worries--you know what you're reacting to....so simply eliminate ALL gluten for life. You'll be glad you made the decision.

tarnalberry Community Regular

If you went gluten free in July, and got tested September (four months ago), that means you were gluten free prior to testing, so the tests can't give you a reliable answer to whether or not you have celiac. You have to be consuming gluten at the time of (and for a few weeks or months prior to) testing in order to be accurate.

Brittanyadell Newbie

If you went gluten free in July, and got tested September (four months ago), that means you were gluten free prior to testing, so the tests can't give you a reliable answer to whether or not you have celiac. You have to be consuming gluten at the time of (and for a few weeks or months prior to) testing in order to be accurate.

That's definitely a point I hadn't put much consideration into. Thank you!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,128
    • Most Online (within 30 mins)
      7,748

    Mrs. MaGoo
    Newest Member
    Mrs. MaGoo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kara S
      Hello, my family is very new to Celiac Disease so forgive me for asking what Warrior Bread is and is there a recipe for it online?
    • jessicafreya
      I'd like to make tamales and wonder if anyone has recs for corn husks free of cross contact for a sensitive celiac little boy. Thks!
    • knitty kitty
      Just wanted to add that checking B12 and Vitamin D only is not going to give an accurate picture of vitamin deficiencies.   B12 Cobalamine needs the seven other B vitamins to work properly.   You can have vitamin deficiency symptoms before the B12 blood level changes to show deficiency.  You can have "normal" B12, but have deficiencies in other B vitamins like Thiamine and Niacin, for which there are no accurate tests. Take a B Complex supplement with all the B vitamins.  Take additional Thiamine B 1 in the form Benfotiamine which has been shown to promote intestinal healing.  Thiamine Mononitrate found in most vitamin supplements is not easy for the body to utilize.  What makes thiamine mononitrate not break down on the shelf also makes it hard for the body to absorb and utilize.  Thiamine and Niacin B 3 deficiency symptoms include anxiety, depression and irritability.  The brain uses more Thiamine than other organs.  Take the B Complex and Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and look for health improvements in the following weeks.
    • knitty kitty
      Hello, @rei.b, Ehlers Danlos syndrome and Celiac Disease can occur together in genetically predisposed individuals.  Losing ones gallbladder is common with celiac disease. I'm glad Naltrexone is helping with your pain.  Naltrexone is known to suppress tTg IgA and tTg IgG production, so it's not surprising that only your DGP IgG and DGP IgA are high.   Have you tried the Autoimmune Protocol diet designed by Dr. Sarah Ballantyne, a Celiac herself?  The AIP diet helps lower inflammation and promotes intestinal healing.   The AIP diet is a Paleo diet that eliminates foods that can cause intestinal inflammation until you heal on the inside, then more foods can be added back in.  The low histamine AIP diet will help reduce inflammation further.   Histamine is released as part of the immune response in celiac disease.  Foods also contain various amounts of histamine or provoke histamine release.  Lowering the amount of histamine from foods helps.  The body, with help from B vitamins, can clear histamine, but if more histamine is consumed than can be cleared, you can stay in an inflammatory state for a long time. Cutting out high histamine foods is beneficial.  Omit night shades which contain alkaloids that add to leaky gut syndrome found with celiac disease.  Night shades include tomatoes, peppers including bell peppers, potatoes and eggplants.  Processed foods like sausages and gluten-free processed products are high in histamines.  All Grains are removed from the diet because they are inflammatory and provoke histamine release. Blood tests for deficiencies in B vitamins are notoriously inaccurate.  You can have vitamin deficiency symptoms before blood levels show a deficiency.  Blood levels do not accurately measure the quantity of B vitamins stored inside the cells where they are utilized.  The brain will order stored vitamins to be released from organs into the blood stream to keep the brain and heart supplied while deficiency occurs inside organs, like the gallbladder.  Gall bladder dysfunction is caused by a deficiency in Thiamine Vitamin B 1 and other B vitamins.   The eight essential B vitamins are water soluble and easily lost with diarrhea and constipation, and the malabsorption and inflammation that occurs with celiac disease.  Because they are water soluble, the body can easily excrete any excess B vitamins in urine.  The best way to see if you are deficient is to take a B Complex and Thiamine in the form Benfotiamine and look for health improvements in the following weeks.  Most B Complex supplements contain Thiamine Mononitrate which is not bioavailable.  The body has a difficult time utilizing thiamine mononitrate because it doesn't break down easily.  Benfotiamine has been shown to promote intestinal healing.   Remember your intestines are in a damaged, permeable state.  Treat them tenderly, like you would a baby until they heal.  You wouldn't feed a baby spicy bell peppers and hard to digest corn and nuts.  Change your diet so your intestines can heal.   I use a combination of B12 Cobalamine, B 6 Pyridoxine, and B1 Benfotiamine for pain.  These three B vitamins have analgesic properties.  They relieve pain better than other otc pain relievers. 
    • Mari
×
×
  • 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.