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

I'm Extremely Confused..

Lizzz88

Recommended Posts

Lizzz88 Rookie
Lizzz88
Posted

I'm really confused and I really hope someone can help me! I had the blood test(Celiac Pannel) done in December to check for Celiac. I tested positive. Then, I had an endoscopy in January. I had a lot of damage to my esophagus and stomach(I have ulcers, acid refulx, hiatal hiernia, etc). My doctor didn't mention the Celiac until I asked and he responded, "you look pretty flattened out in your small intestines." I never got the results back from the biopsie they took to check for Celiac. I called and called and he finally said that the test was inconclusive, so we did a genetic test. I tested negative. So, if I don't have the gene does that mean that I don't have Celiac? I am still really sick! I've been on the diet for 2 months now, so I'm scared to get back on wheat.

Please give me advice! thanks!

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

It is possible to have celiac disease without having the 'official' celiac disease genes. Scientists are saying that they probably haven't found all the celiac disease genes yet.

If the doctor could see flattened villi with the naked eye, there is no way the biopsy could have been inconclusive. Especially with your positive blood test. Somebody doesn't know what he is talking about.

You have celiac disease. You need to be strict about being on the gluten-free diet. It can take a while before you really start feeling better, so don't give up.

Under NO CIRCUMSTANCES should you go back to eating wheat, rye or barley.

rez Apprentice
rez
Posted

Correct me if I'm wrong, but I don't think there is any way that a doctor can see flattened villi with the naked eye. That's impossible since it's microscopic damage that needs to be looked at by a pathologist under a microscope. Postive blood work can mean other conditions, unless your EMA was positive. What test was positive? If it was anything other than the EMA, I would get a second opinion because the other tests can be positive for reasons other than Celiac. My son had his scope and biopsy yesterday. They found gastritis in his stomach which is totally unrelated to Celiac. He could have an entirely different condition, or a condition in addition to Celiac. He had a positive tTG. We're anxiously waiting for results. Have they checked for Crohn's or Inflammatory Bowel Disorder? Good luck.

rez Apprentice
rez
Posted

Just re read your post. LOOK DEEPER!! Especially if you're still not feeling well. Have them biopsy for H Pylori, EE, and Crohn's too. My son had two negative H Pylori blood tests, but the doctor said those are very unreliable. Good luck and I feel for you.

Lizzz88 Rookie
Lizzz88
Posted
  • Author
Just re read your post. LOOK DEEPER!! Especially if you're still not feeling well. Have them biopsy for H Pylori, EE, and Crohn's too. My son had two negative H Pylori blood tests, but the doctor said those are very unreliable. Good luck and I feel for you.

Whenever they did my scope, I'm scared they didn't take the biopsie of my small intestines to check for celiac. I was out of it, but my mom said when she asked about it the doctor had a strange look on his face and replied, "she looked pretty flattened out." So, I wonder if he was just covering himself by saying that the test was inconclusive. I guess what i'm gonna have to do is slowly put wheat back in my diet and they are going to have to scope me again. I'm just really sick, and I'm sick of being sick. It's almost 3 months now! I had gastristis, ulcers in my stomach, deuodeunem, and esophagus, acid reflux with blood, and a hiatal hiernia. They rechecked me for h pylori by a stool test, which they said was reliable, and it came back negative. I really hope they figure everything out! I've had to change my entire schedule. I had to change to online classes and I quit my job, so it's been really hard. This just makes it harder!

rez Apprentice
rez
Posted

I feel so bad for you. I urge you to get a better, more competent doctor. If you had all that damage inside, they need to find a root cause and get you better! That doctor is definitely out of it if he thought he was telling you about your villi from the scope. It's scary. We go to the University of Chicago and see a world known GI. It's amazing when you have a good doctor. We went through some really bad ones. I know it's so hard, but try to stick up for yourself and search for better care. I'll say lots of prayers for you.

rez Apprentice
rez
Posted

Forgot to ask, it's really important to find out which blood test was positive. I would only trust the EMA to be 100% Celiac.

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

the doc can't tell you anything positive from the scope---he can guess, but the damage is microscopic. i would ask for the actual lab report to hold in your fist and take home. i would ask for copies of your blood results, also.

jayhawkmom Enthusiast
jayhawkmom
Posted

I agree. Your GI is nuts. If he is telling you that he saw flattening of the villi with the naked eye, and then said that your results are inconclusive... he's seriously insane, and not a very good doctor.

Have you tried a gluten free diet?? Obviously, you have more going on than "just" Celiac, if you even have Celiac - but a gluten free diet can help alleviate some of the symptoms you are having.

If I were in your shoes, I'd be looking for another GI - and I'd be demanding some answers. Also... when you go to another doctor, take all your medical records from THIS doctor with you, and ask for some clarification.

Best wishes to you!

wowzer Community Regular
wowzer
Posted

You said the blood test was positive for celiac. I would go with that. See if the gluten free diet helps you.

mamabear Explorer
mamabear
Posted
I'm really confused and I really hope someone can help me! I had the blood test(Celiac Pannel) done in December to check for Celiac. I tested positive. Then, I had an endoscopy in January. I had a lot of damage to my esophagus and stomach(I have ulcers, acid refulx, hiatal hiernia, etc). My doctor didn't mention the Celiac until I asked and he responded, "you look pretty flattened out in your small intestines." I never got the results back from the biopsie they took to check for Celiac. I called and called and he finally said that the test was inconclusive, so we did a genetic test. I tested negative. So, if I don't have the gene does that mean that I don't have Celiac? I am still really sick! I've been on the diet for 2 months now, so I'm scared to get back on wheat.

Please give me advice! thanks!

First I would establish what all was biopsied and what were the results. Ask your internist or FP to get a copy of the pathology and then you can see what was recorded.

Second, gee...I hate to say this, but.....you can see some damage some of the time. It is POSSIBLE to see abnormal areas in the small intestine with the naked eye via the scope or capsule endoscopy, but it takes a very experienced GI to do this. Patchy areas can be visible as well as "scalloping" which has a very distinctive look on the edges of the intestinal folds. There is a wonderful Wikipedia reference to this under celiac disease......pictures,too! Usually the converse is true

that you have to wait on the cytology report, but there are exceptions.

Third, ~5% of celiacs do not have DQ2 or DQ8......so it is possible that you have celiac sprue

and not those genes.

I also would not think going back to gluten makes any sense for you unless you are willing to have further invasive testing with another GI. Do you have a good family doctor to help evaluate all this?

I agree you need to know which blood tests were done, as they are given different levels of importance in predicting celiac disease.....but we celiacs come with all kinds of "pedigrees'....it would be so nice if the researchers could come up with the ONE 99.99999% accurate test!!!!!!!!

mamabear Explorer
mamabear
Posted
First I would establish what all was biopsied and what were the results. Ask your internist or FP to get a copy of the pathology and then you can see what was recorded.

Second, gee...I hate to say this, but.....you can see some damage some of the time. It is POSSIBLE to see abnormal areas in the small intestine with the naked eye via the scope or capsule endoscopy, but it takes a very experienced GI to do this. Patchy areas can be visible as well as "scalloping" which has a very distinctive look on the edges of the intestinal folds. There is a wonderful Wikipedia reference to this under celiac disease......pictures,too! Usually the converse is true

that you have to wait on the cytology report, but there are exceptions.

Third, ~5% of celiacs do not have DQ2 or DQ8......so it is possible that you have celiac sprue

and not those genes.

I also would not think going back to gluten makes any sense for you unless you are willing to have further invasive testing with another GI. Do you have a good family doctor to help evaluate all this?

I agree you need to know which blood tests were done, as they are given different levels of importance in predicting celiac disease.....but we celiacs come with all kinds of "pedigrees'....it would be so nice if the researchers could come up with the ONE 99.99999% accurate test!!!!!!!!

Sorry...a little more....I did not mean to imply you don't need the biopsy!! You do.....I just mean that abnormalities CAN be visible, but get the tissue for biopsy if you are in the small intestine!!

Lizzz88 Rookie
Lizzz88
Posted
  • Author
I agree. Your GI is nuts. If he is telling you that he saw flattening of the villi with the naked eye, and then said that your results are inconclusive... he's seriously insane, and not a very good doctor.

Have you tried a gluten free diet?? Obviously, you have more going on than "just" Celiac, if you even have Celiac - but a gluten free diet can help alleviate some of the symptoms you are having.

If I were in your shoes, I'd be looking for another GI - and I'd be demanding some answers. Also... when you go to another doctor, take all your medical records from THIS doctor with you, and ask for some clarification.

Best wishes to you!

Yeah, I've been on a gluten free diet since the end of December. So, two months now. It seemed to help with the lower gi problems at first, but now it's kind of bad again. I've been really careful because I'm not going back on wheat until they figure things out! I go to this doctor on March 14th and I'm gonna take all my records to another doctor. I might end up having a colonoscopy. Is that a bad test or is it similiar to the endoscopy? Is that how they check for Crohn's?

2Boys4Me Enthusiast
2Boys4Me
Posted

Hmm. Ty had an upper endoscopy when he was diagnosed. They checked his esophagus, stomach and duodenum. If they've already biopsied you there, can't they use those samples in addition to your blood test to confirm or deny celiac? The duodenum is the "top" part of the intestines and from what I understand, usually the first section of the intestines to show villi damage.

rez Apprentice
rez
Posted

I'm so confused. I was under the impression that they could see abnormalities/scalloping in the folds and mosaic type patterns in the duodenum, but I thought our doctor told us they need to take samples to look at the villi because the damage could be microscopic. If they can diagnose based on what they see, why do they take biopsies at all? Does everyone with Celiac have that visible damage? This is all so hard to grasp.

Lizzz88 Rookie
Lizzz88
Posted
  • Author

Let's see, well, I just asked my mom what blood test was positive and she said the IgG was. Which when I researched, it said that IgG can just mean that a GI problem exist.

I really think that this doctor either lost or forgot to take that biopsie when he scoped me because I got all the results back except that one(which was the most important!) and then when he finally answered back he just said that it was inconclusive. Does anyone think that I should get in touch with the lab and find out if there ever was a biopsie?

These are my symptoms..if anyone knows what this could be, please tell me because I'm sick of feeling sick and my doctor doesn't seem to know.

-Sharp pain below breast bone(top of stomach)

-Cramping of stomach(middle and lower)

-Still having a lot of acid reflux..I'm on prevacid twice a day and taking Carafate 4 times to coat the ulcers.

-Nausea constantly

mamabear Explorer
mamabear
Posted
I'm so confused. I was under the impression that they could see abnormalities/scalloping in the folds and mosaic type patterns in the duodenum, but I thought our doctor told us they need to take samples to look at the villi because the damage could be microscopic. If they can diagnose based on what they see, why do they take biopsies at all? Does everyone with Celiac have that visible damage? This is all so hard to grasp.

I've sent you a PM. You are correct in that the inspection through the endoscope may LOOK normal, and be abnormal on biopsy. I was trying to say it IS possible to see the damage. Ultimately, the biopsy results trump the visuals.

Lizzz88 Rookie
Lizzz88
Posted
  • Author
I've sent you a PM. You are correct in that the inspection through the endoscope may LOOK normal, and be abnormal on biopsy. I was trying to say it IS possible to see the damage. Ultimately, the biopsy results trump the visuals.

I didn't get a PM..can you resend it? Thank you for your help!

rez Apprentice
rez
Posted

Sorry, I think there was a misunderstanding. Ann sent me a PM to explain some things to me. :) Basically, she explained that they can sometimes see folds or scalloping of the duodenum, but the pathologist looks for the microscopic damage done to the villi. Good luck.

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. trents
      - trents replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would...
    2. trents
      - trents replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac...
    3. Gigi2025
      - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

      No, I've not been diagnosed as celiac. Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction. However, avoiding it here in the states. Thanks everyone for your responses.
    4. Rejoicephd
      - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      7

      Oral thrush question

      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed...
    5. catsrlife
      - catsrlife posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,897
    • Most Online (within 30 mins)
      7,748
    Sgp
    Newest Member
    Sgp
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      How Come Gluten Didnt Bother Me In Italy

      By trents · Posted

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
    • Rejoicephd
      Oral thrush question

      By Rejoicephd · Posted

      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
×
×
  • 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.