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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,963
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.