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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748
    AndiSchweb
    Newest Member
    AndiSchweb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.