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

Negative Blood Test But A Lot Of Symptoms

staci002

Recommended Posts

staci002 Rookie
staci002
Posted

I am brand new and I'm so thankful to have found this site. Forgive me if my post shows up twice. I had it all typed once and then it disappeared! I am welcome to any comments or suggestions. Please help! Here is my story...

I'm 38 years old and for 2 years now I have been dealing with an array of problems. I am always very tired and have zero energy. It got so bad that my employer laid me off a year ago so I could try to get control of myself. I am back to work now but only working about 30 hours a week. Most days I have to nap as soon as I get home because I'm so exhausted. For the past year I have been dealing with a lot of stomach issues. The main one being abdominal bloating (I once had a nurse ask me when I was due because she thought I was six months pregnant!) along with abdominal pain, diarrhea, constipation etc. I have been diagnosed with fibromyalgia, CFS, and hypothyroidism. I had my gallbladder removed thinking that was going to solve at least some of my issues but nothing changed. I have muscle and joint aches and feel very depressed. I get migraines, I have noticed hair loss, irritability, panic attacks and lately I've been bruising easily. I've had a colonoscopy, endoscopy, hydrogen breath test (negative) and a ton of blood tests. The colonoscopy showed lymphocystic colitis. My blood test for Celiac was negative. My blood work did show some vitamin deficiencies. I am scheduled for a lactose intolerance test this Friday but to tell you the truth, I'm so tired of being told that nothing is wrong with me. There is something going on and I don't know where else to turn! I'm at my wits end with the gastro doctor. He keeps telling me that he can't find anything and that fibromyalgia can cause abdominal bloating. It bloats shortly after I eat just about anything. By the end of the day I can't even button my jeans. Can I have a negative Celiac test but still be sensitive to gluten? Is there another test that I could ask for or should I just try to go gluten free to see if it makes a difference? I know eating gluten free will be a lifestyle change but I'm at the point where I will do anything to feel better. Where is the best place to find information on gluten and non gluten free food? Please help!

Sincerely, Staci

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Hello, and welcome to the board.

You ask: "Can I have a negative Celiac test but still be sensitive to gluten?" and the answer is ABSOLUTELY!!!!! Read the following articles:

http://www.celiac.co...rent/Page1.html

Open Original Shared Link

http://online.wsj.co...eTabs%3Darticle

For the three years I have been posting on this board we have been saying that celiac disease is not the beginning and end of gluten intolerance. Finally the research is starting to catch up with this. Is there any other way to get a diagnosis? Well, I don't know if your doctor did an endoscopy when he did your colonoscopy, and took biopsies to test for celiac, but that is really the only other testing that would give a celiac diagnosis. There is currently no test for non-celiac gluten intolerance - it is just a process of elimination. Many posters on the board have had years of symptoms and been through all the testing and have no diagnosis. They stop eating gluten and they get better. So we all know it, but the doctors aren't quite there yet. Some will tell you to try the diet anyway, and nine times out of ten you will get better. If have heard of very few who have come back and said, I am absolutely no better. There are some occasional posters who actually have undiagnosed lyme disease (about as hard to get a diagnosis for as celiac, unless you have a "lyme literate medical doctor" known as an LLMD, The only other test is if you have the skin form of celiac called dermatitis herpetiformis, in which case a biopsy of the skin adjacent to the lesion can be taken and, if positive, is a positive diagnosis of celiac disease. You can have the genetic testing to see if you carry one of the two major genes associated with celiac, but there are others not tested for in the U.S., and it is not diagnostic if you test positive, only predisposing you to develop it. There is a test you can order online at Enterolab which will test for IgA antigliadin, as well as the genes for both celiac and non-celiac gluten intolerance, and will also test for intolerances to casein, soy and something else I don't remember now, as well as giving you an indication of how your digestive system is functioning. This test is not normally covered by insurance.

Okay, so all that being said, if you just want to feel better you can start eating gluten free today if you wish. It needs no doctor's permission or prescription, you can self-diagnose yourself as gluten intolerant and start feeling better today :P It is of course your decision which path you choose to follow. If you want to start learning about going gluten free there is no better place to start than celiac.com. :D

I hope this has been of some help. Come back with any other questions.

staci002 Rookie
staci002
Posted
  • Author

Dear Mushroom,

Thank you so much for all the information! There is no question that I am starting a Gluten free diet today. I have nothing to lose! I need to do some further research because I understand that gluten can be "hidden" in things. Also, after reading some other posts I understand that sometimes you actually feel worse for a little while when first starting gluten free? I'm worried that I won't know what to eat that will give me a little energy. I'm a HUGE coffee addict but I'm going to try to limit that a little as well. Thanks again and I'm excited to see if this works!

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. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    3. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    4. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    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

    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
×
×
  • 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.