Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

**blink - Blink** Oooooh Kay!

quietmorning01

Recommended Posts

quietmorning01 Explorer
quietmorning01
Posted

I asked for the labs and the endoscopy report, and they very nicely gave them to me. Before I read them, I talked to the doc. He wants me to stop taking the Pepto twice a day to see if it's the Pepto or the lack of gluten in my diet that's making me feel better.

He took another blood test - told him I haven't eaten any gluten, that the test probably wouldn't come out. He said it would if it were positive. . .but then he said, "Well, if it's positive, it's definite, if it's negative, it's got about a forty percent chance of being wrong."

Sigh.

Ok.

So I asked him if the actual villia structure were damaged from the biopsi, as he said it was positive. . .and he said they didn't test for damage to the villia. . .

But there was inflammation.

At THIS point, I am now confused. I'm fairly bright, and I have an excellent memory - photographic. . . so THIS doc visit was completely different from the LAST visit. . . did he not READ the report, or did he just see the 'positive' and move on?

I'm supposed to stop the pepto bismal - but remain on the gluten free diet. . . to see if it was the pepto that was helping or the gluten free that was helping. Easy enough, I can do that. They took more blood. . .heh. . .I noticed that the lab work for the BLOOD is not here. Pft. . .just the fecal and the endoscopy.

So, I get home. . .and read the reports. Inflammation is there. . .but all the tests for every parasite known to man is negative. I did not have fat in my the fecal culture.

And the endoscopy. . .it says VERY CLEARLY that the Villia are normal. There is pitting in the wall, but the villia are fine.

Do doc's LIKE sending peeps into a heart attack or something?! Grrrr.

He thinks I might be ALLERGIC to gluten, but (now) both he and I seriously dought it's Celiac. Heh. . .any one want to teach some doc's how to COMMUNICATE?! **LAUGHING** This is so ironic, it hurts. **smirk**

I see him again in four weeks, by that time, the blood tests well be back - and I'll know for sure whether it was the Pepto or the diet that was helpful. He said he may refer me to an Allergist depending on what the tests come back as.

Ok. . .so. . .any thoughts?

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

Celiac.com Sponsor (A8-M):


MaryJones2 Enthusiast
MaryJones2
Posted

I still think there is a very good chance that you are celiac. And at this point I think the real confirmation is your positive response to the diet combined with your tests. I am person who likes absolutes and it was difficult for me to overcome the negative bloodwork. But all the other tests (biopsy, pillcam, enterolab) and my response to the diet eventually convinced me.

quietmorning01 Explorer
quietmorning01
Posted
  • Author
I still think there is a very good chance that you are celiac. And at this point I think the real confirmation is your positive response to the diet combined with your tests. I am person who likes absolutes and it was difficult for me to overcome the negative bloodwork. But all the other tests (biopsy, pillcam, enterolab) and my response to the diet eventually convinced me.

Yeah, I told him that the difference is like night and day, and I would be very hard pressed to start eating gluten again - because wow. . .the pain is GONE. He argued and said that the gluten free diet is like the Atkins diet - and I'd only be able to eat rice. . .I laughed and said . . .and potatoes, and millet, and buckwheat. . .he blushed and said, "oh, yeah, I wasn't thinking about those other things. . ."

LOL. . .well. I'll wait to see how the next set of blood work comes out - but I haven't been eating glutten for about three weeks, now. . .so I seriously doubt they are going to show anything even if I am. I'm still hard pressed to go back to eating it, though. I just feel so much better. Too much better to just ignore it.

The one thing that I'm thinking is that if this is an allergy, and not the autoimmune disorder. .. then that's at least less threatening. But I would want an allergy test to make sure. I don't want to assume that I'm not Celiac and not be as careful - and then do massive damage if I am.

Hmph. . .nothing is ever so simple, eh?

ang1e0251 Contributor
ang1e0251
Posted

Sorry to complicate things but there is another possibility; gluten intolerance. There is no test you can take to prove it. All the celiac disease tests will show negative but you still get all the symptoms. Some even think it's a precursor to celiac disease.

If you have a strong dietary response to the gluten-free diet, I would never give that up. Your body is telling you what works for you. Listen to it and enjoy good health!

nasalady Contributor
nasalady
Posted
Yeah, I told him that the difference is like night and day, and I would be very hard pressed to start eating gluten again - because wow. . .the pain is GONE. He argued and said that the gluten free diet is like the Atkins diet - and I'd only be able to eat rice. . .I laughed and said . . .and potatoes, and millet, and buckwheat. . .he blushed and said, "oh, yeah, I wasn't thinking about those other things. . ."

LOL. . .well. I'll wait to see how the next set of blood work comes out - but I haven't been eating glutten for about three weeks, now. . .so I seriously doubt they are going to show anything even if I am. I'm still hard pressed to go back to eating it, though. I just feel so much better. Too much better to just ignore it.

The one thing that I'm thinking is that if this is an allergy, and not the autoimmune disorder. .. then that's at least less threatening. But I would want an allergy test to make sure. I don't want to assume that I'm not Celiac and not be as careful - and then do massive damage if I am.

Hmph. . .nothing is ever so simple, eh?

Especially being tested for celiac disease! LOL!

Two stories (mine and my granddaughter's):

I went gluten free in August of last year to see how I felt. The difference was AMAZING! I started eating gluten again because I didn't want to mess up the bloodwork and within two days felt like I'd been run over by a Mac truck. I broke out with sores all over my mouth, an itchy rash on my back and all sorts of gastric symptoms, plus headaches, vertigo, you name it I had it.

It took a few months to get everything done, but finally I had my bloodwork and biopsy results: both negative. The only indicator that I might *possibly* be pre-disposed to develop celiac disease was the fact that DNA testing revealed that I'm HLA DQ8.

Fortunately for me, I have an intelligent, well-informed gastroenterologist, who said that he expected all the tests to be negative because I was (and still am) on high dosages of immunosuppressants (prednisone and Imuran). He said that the drugs would suppress the autoantibodies and he still thinks I have celiac disease, because of my dietary response, my talent for developing autoimmune diseases, my DNA, and my family history of celiac disease. But this is the only "diagnosis" I'm going to get!

It doesn't really matter, because I've gone gluten free for good. I just could never go back to eating something that makes me so sick!

My granddaughter Carly was the classic "celiac baby". Failure to thrive, major gastro symptoms including reflux and diarrhea, she was just skin and bones at the age of three. But her bloodwork and first biopsy were both negative. Fortunately, her doctor decided to do a second biopsy several months later....that one was positive! She is a completely different kid now...healthy and growing like a weed on the gluten free diet.

So many of the people on this forum have similar stories....so don't worry too much about having positive bloodwork or biopsy. Just stick with the gluten free diet if it's working for you!

Good luck!

JoAnn

purple Community Regular
purple
Posted
Sorry to complicate things but there is another possibility; gluten intolerance. There is no test you can take to prove it. All the celiac disease tests will show negative but you still get all the symptoms. Some even think it's a precursor to celiac disease.

If you have a strong dietary response to the gluten-free diet, I would never give that up. Your body is telling you what works for you. Listen to it and enjoy good health!

I agree. From what I have read about all three, I believe my kids are intolerant which means they have to be treated as though they are celiac.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,293
    • Most Online (within 30 mins)
      7,748
    Jschwind351
    Newest Member
    Jschwind351
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      is my celiac disease gone?

      By Wheatwacked · Posted

      I should point out that iodine is known to exasperate dermatitis herpetiformis blistering. It can take several months or even years of a strict gluten-free diet for the IgA-TG3 deposits to clear from the skin. After the skin completely heals, iodine may no longer trigger symptoms. "The circulating antibodies disappear and skin symptoms resolve as a result of gluten-free diet but the cutaneous anti-TG3 IgA deposits may persist for several years. " Missing Insight Into T and B Cell Responses in Dermatitis Herpetiformis
    • Wheatwacked
      is my celiac disease gone?

      By Wheatwacked · Posted

      I get my supplements f from Pipingrock.com close to 10 years now. Good quality, prices, ship  worldwide.  My 25(OH)D is at 93 ng/ml after 10 years taking. In 2019 it had still only gotten to 47 ng/ml.  Celiac Disease causes low D from malabsorption. High Potency Vitamin D3, 10,000 IU, 250 Quick Release Softgels 4.8 out of 5 stars, average rating value. Read 1662 Reviews. Sale price$10.70 Regular price$21.39 Basil Carcinoma.  Basil cell carcinoma is the result of failure of the immune system to recognize fauty DNA in cells. It is iodine that causes apoptosis, killing old and defective cells.  Not enough vitamin D to control the immune system and not enough iodine to do the job.  I had a sebaceous cyst, my seventh facial cyst, in 2014.  It started looking like a blackhead, but grew (Third eye blind).  All my 7 previous cysts had drained and healed normally.  When I drained this, there was a hairball the size of a BB and it would not heal.  This was one of many reasons I started Gluten Free.  I chose to not have it surgically removed, because I realized I had nutrient deficiencies that were causing slow healing.  By 2015 I realized it was Iodine deficiency and started eating seaweed, which helped my muscle tone, but not the healing.  The warnings on iodine from the gov't were so scary, I was afraid to use them.  Turns out it is all based on one study on rats in 1948. "The Wolff-Chaikoff Effect:   Crying Wolf?"   Last year I started taking 600 mcg a day and it is reversing my glaucoma and fixing muscle tone, hair nails and skin all returning to healthy,  Brain fog, which had improved dramatically on Gluten Free diet, my thinking got even clearer with the iodine. Finally the cyst my bellwether since 2014, began to heal.  So I had it biopsied  in July 2025, came back basal cell carcinoma.  With the Iodine (Piping Rock Liquid Iodine 12 drops a day 😃 = 600 mcg) is healing normally and I have a follow up in December.  By then it will have healed.  It is scabbing over like a normal wound.  In 1970 the US stopped using Iodine as a dough modifier.  The daily intake of Iodine dropped in the US 50% between 1970 and 1984.  Also, prescriptions for thyroxine have doubled.  150 mcg the RDA is not enough for anything more than preventing goiter.  Growing up in the sixties just 2 slices of bread had 200 micrograms of iodine, add a glass of milk and iodized salt and you're at 300 mcg a day.  The safe upper tolerable limit in the US is 1000 mcg.  In Japan it is 3000 mcg and the average Japanese, traditional diet, averages above 1000 mcg.  Remember when in the 80's our schools were loosing competitions to Japanese schools?  Iodine.  And Japan has 50% less breast cancer.  Nicer hair nails and skin.  It the US our kids are getting dumber, more flabby.  Fertility is dependant on enough iodine, also. 600 mcg.
    • numike
      is my celiac disease gone?

      By numike · Posted

      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      is my celiac disease gone?

      By Wheatwacked · Posted

      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      is my celiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
×
×
  • Create New...