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

Diddo On The Neg Test Results

Sandyo

Recommended Posts

Sandyo Apprentice
Sandyo
Posted

I will try to make this as short as I can...but would like some feedback. Both Doctor's I went to are telling me I do not show symptoms of gluten intolerance or Celiac Sprue and my blood test (5 anitbodies) came back neg. I don't know the numbers, the Doc said two are a little "high" but not enough for intolerance or Celiac.

I've been lactose intolerant for 6 years, hit me all of a sudden. My mother is allergic to many meds, milk, wheat, corn and soy. Has always had problems with foods. My sister is now having the exact same symptoms as I am.

Started 2 months ago. Nausia after eating, stomach cramps, bloating, excessive gas, hard extended stomach, gained 8 pounds can't get off even with running 25 miles a week and lifting weights, dull headaches, sharp pain right rib cage, constipation for years (when I do go they are hard, and very dark, usually little tiny balls and I have to strain a lot) even though taking 3 stool softners a day and one with laxative, had a migrain the other day (haven't had one for years), body aches, floating stools, feels like my heart is beating funny sometimes, rash that comes back after taking everything including acutane (not itchy or red but not like acne, Dermatologic is stumped, did a biopsy last week), bruise very easily, and sick twice within the month, stomach ache (threw up) and a cold for 5 days (and I'm never sick...I mean NEVER sick), don't sleep well but always tired.

I thought for sure I knew what was wrong. I went off gluten for 3 days and felt better then had to eat some for the blood test. Ate some for 3 days before the blood test so I think that was enough. I've been gluten free for about a week now and feeling better and I ate Frosted Flakes this morning (though I saw they were ok) and am not feeling well today.

My questions are: Does it sound like I'm gluten intolerant? Is being intolerant not as dangerous as having Celiac disease? And could it be that I just need to limit my gluten? Or is it all or nothing?

Thank you for your comments.

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

Celiac.com Sponsor (A8-M):


wolfie Enthusiast
wolfie
Posted

Sorry you aren't feeling well. It is an all or nothing thing...if you are gluten intolerant, only a gluten-free diet will help you feel better. Same with Celiac....life long adherance to a gluten-free diet. To my knowledge Frosted Flakes are not gluten-free. You can still have gluten intolerance and/or Celiac with negative blood work. If the diet makes you feel better, stay on it.

Hope you feel better soon!

jerseyangel Proficient
jerseyangel
Posted

Sounds like you are gluten intolerant to me. The tests that the doctor said were a 'little high' is a bit suspicious. We hear stories all the time where a doctor is reluctant to diagnose Celiac. All of your symptoms point to it. You may have even skewed the blood tests by going off gluten beforehand. The big tip-off, though is the positive response to the gluten free diet. That should tell you all you need to know. (I don't believe Frosted Flakes are gluten-free). The difference between Celiac and gluten intolerance is that in Celiac, there is proof of flattened villi in the small intestine. The treatment for both conditions is the same--100% gluten-free. It really is important to be 100% with it--you won't gain a thing by going light on the gluten. Yep--all or nothing :D

Sandyo Apprentice
Sandyo
Posted
  • Author
Sounds like you are gluten intolerant to me. The tests that the doctor said were a 'little high' is a bit suspicious. We hear stories all the time where a doctor is reluctant to diagnose Celiac. All of your symptoms point to it. You may have even skewed the blood tests by going off gluten beforehand. The big tip-off, though is the positive response to the gluten free diet. That should tell you all you need to know. (I don't believe Frosted Flakes are gluten-free). The difference between Celiac and gluten intolerance is that in Celiac, there is proof of flattened villi in the small intestine. The treatment for both conditions is the same--100% gluten-free. It really is important to be 100% with it--you won't gain a thing by going light on the gluten. Yep--all or nothing :D

Yes, I thought that "alittle high" was a bit odd. Am I allowed to get a copy of the blood test? Will the doctor's office make me a copy if I ask?

jerseyangel Proficient
jerseyangel
Posted

Yes--by all means tell them you would like a copy. (notice I didn't say ask them for a copy) :D

ravenwoodglass Mentor
ravenwoodglass
Posted
Yes, I thought that "alittle high" was a bit odd. Am I allowed to get a copy of the blood test? Will the doctor's office make me a copy if I ask?

It's kind of like being a little bit pregnant <_<:(:huh:

Yes the doctors office will give you a copy, you have a legal right to them but some will charge you a copy fee.

Sandyo Apprentice
Sandyo
Posted
  • Author
It's kind of like being a little bit pregnant <_<:(:huh:

Yes the doctors office will give you a copy, you have a legal right to them but some will charge you a copy fee.

Is it either high or not high or are there levels like Colesteral testing?

Thanks, I will get a copy tomorrow. My one doctor wouldn't even test me. He said go off gluten and if your symptoms go away then I'll test you. After reading just a few posts, I realized he had not idea what he was talking about.

Thanks for your help!!!

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

Celiac.com Sponsor (A8-M):


DonnaD Apprentice
DonnaD
Posted

Do get copies of your test results. My doctor told me many of mine were fine and they actually were boarderline. I did Enterolab because I had been 95% gluten-free for ages (thanks to all here for the advice). My little girl told me the other day that I know far more than any doctor about these problems, ( I don't I'm still learning but it is nice to be appreciated LOL ) she is 11 and has gained 6lbs and 2" height on the gluten-free diet. I have had to buy her a whole new wardrobe in age 9/10 (she was in age 8) its so exciting to see her getting some colour in her cheeks and energy to do things other kids take for granted. All I can say is 'don't get mad, get even'. get all your test results and look them up online or post them here. Western medicine is geared towards poisons (antibiotics) etc and we need to learn from traditional medical systems ( i.e. chinese) to balance our diet/systems. I'm 42 and only just finding out why my health sucks, i'v seen 30+ doctors, 5+ consultants, 5+ physio therapists, 1 chiropractor, 1 oestopath. 1 irridologist (best £40 I ever spent), 1 traditional chinese doctor. The most important thing I ever did for my health was ask questions here and listen to/research the answers.

Good luck

D

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. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    2. 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!
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      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...
    4. 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...
    5. 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...
  • 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

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • 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!
×
×
  • 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.