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

No Celiac

jknnej

Recommended Posts

jknnej Collaborator
jknnej
Posted

Well, my diagnosis is no Celiac Sprue from my endocscopy.

My results are in. No Celiac, and no h.pylori, thank god!

He did say that because I've been gluten-free it could effect results, BUT he said he saw none of the typical signs of sprue. I asked him what those were and he said there were certain "histological" signs, whatever that is, and he said I had none.

He also didn't think I had it just from looking at my bloodwork.

So, the diagnosis is no Celiac.

That is good for getting health insurance:)

I have no intention of eating gluten again, but I won't panic so much when I eat out now.

He says I have reflux but no damage. I am taking Nexium for this.

He also says I have IBS ( I knew this of course) with lactose intolerance. I'm not sure how he "knows" this but it's what he suspects at least.

Not a problem since I've been eating well and rarely eat dairy.

But I need a sour cream and cream cheese subsitute for sure!

Are they any lactose intolerant people who can handle cheese?

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

Celiac.com Sponsor (A8-M):


Jnkmnky Collaborator
Jnkmnky
Posted

Well, how do you feel about these results? Are you concerned that questions might not be answered in regards to your overall health? Are you relieved? Do you have some concern that the results are wrong? Or do you feel that the results make sense for other reasons?

KaitiUSA Enthusiast
KaitiUSA
Posted

Well if you have been gluten free of course the endoscopy would show negative. The damage would heal, you would get an endoscopy, it would show negative, and he would say you don't have celiac...that then may not be true.

Which blood tests did you have done originally and what were the results?

If it's not this then what is it? There is obviously something going on.

julie5914 Contributor
julie5914
Posted

That has to be a little disappointing. I have been diagnosed with IBS, and I guess since we still know so little about it, it still kinda seems like a bogus diagnosis. If you have predominant const., try Zelnorm. It does help some. I have heard that Zoloft really does help with the spasms too and is not diagnosed just because some doc thinks it's all in your head. :P A good resource with an active forum like this is Heather's IBS page. If you google it, it will come up on top. I would stay gluten free, but also stick to soluble fiber and not insoluble - there is a big difference with IBS. She also has an article about which types of fiber supplements are good and which contain chemicals that might cause spasms. (Like Benefiber powder vs. the chews - they are different). Best of luck towards feeling better - did they say yea or nea yet on the thyroid trouble? I remember your stuff sounding very much like thyroid...

jknnej Collaborator
jknnej
Posted
  • Author

My blood test results were:

Antigliadin ABs IgA 8

Antigliadin Abs IgG 47

Transglutaminase IgA 4

Dr. told me just from looking at this before endoscopy he did not think I had celiac disease.

He said the most important test, the one they really look at is the bottom one, the Transglutaminase. He said it used to be they looked at all of them but in the past few years they have realized the bottom test is the most important in identifying celiac disease.

It says in the report of the 3 tests:

Test 1: Reticulin IgA antibodies are specific for celiac disease and occur in 60% of patients with active disease.

Test 2: IgG antibodies are NOT specific for celiac disease and occur in 20% of patients with active disease. This is the only one I tested high in.

Test 3: Tissue transglutaminase has been identifed as they endomysial antigen. Studies have demonstrated that endomysial IGA antibodies have over 99% specificity for gluten sensitive enteropathy.

According to this I only have a 20% chance of having celiac disease. (of course I could still be gluten intolerant)

Because of this and the fact that he saw no histological signs or biopsy problems he says I don't have celiac disease.

I'm not going back to gluten, or anything like that. I will just be a teensy bit less worried when I eat out that there was a cross contamination issue.

They tested my thyroid and that is not the problem. It came out OK..so it is still a mystery! BTW, I can't use Zelnorm b/c my main problem with IBS isn't constipation...it's the other side, if you know what I mean! LOL

He did give me a brand new IBS drug called Nu-lev or something like that. He says his wife has IBS and swears by it. When you get pain you pop a pill that dissolves under your tongue. He says it literally abates the attack.

I'm going to try it as soon as my tummy acts up again!

He also says I have "reflux without damage" which he says is obviously better than its counterpart, reflux with damage. I am taking Nexium and it has really been helping.

Matilda Enthusiast
Matilda
Posted

..

jknnej Collaborator
jknnej
Posted
  • Author

Hi Matilda,

I don't know what to think at this point. My dr. thinks I do not have celiac disease because of my bloodwork and endo. I never had an endoscopy before this one. If I had had a positive endoscopy earlier, of course I would believe I have celiac disease! I would not have even bothered with further testing.

My other GI dr. also did not believe I had celiac disease but he never did the endo so he couldn't say with certainty.

I didn't really say I was going to relax about gluten, I just said when I eat out I won't have as much anxiety; I won't worry about it as much. Usually I freak out when I'm in a restaurant b/c I'm sure they're going to gluten me.

To me it looks like I have about a 20% chance of having celiac disease. That is not very high. It's not to say I don't believe I have it, that is just not very high.

I'm not eating gluten either way so it's not like I'm in denial or something.

I also heard candida can make it look like you have celiac disease and I know for certain I have candida issues. Perhaps that is why my blood work came back as it did...

Don't know...but I am staying gluten free for sure.

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

Celiac.com Sponsor (A8-M):


LaurieAnn13 Newbie
LaurieAnn13
Posted

How long have you been following the gluten-free diet? I know I became lactose intolerant shortly before I got my actual diagnosis of celiac disease, but after a few months on the gluten-free diet, I was able to eat dairy again with no problem...perhaps this could be true in your case even if you are only gluten intolerant or something like that?

Laurie

jknnej Collaborator
jknnej
Posted
  • Author

I've been gluten-free for 6 months.

My dr. thinks I'm lactose intolerant. He says this b/c he says that IBS and lactose intolerant are almost always seen together, and I have IBS.

I've already cut down on dairy but now I'll probably go even less or none.

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
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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.