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

Antibodies?

confused mom

Recommended Posts

confused mom Rookie
confused mom
Posted

My daughter has tested positive for the antibodies for Celiac. Does she really need the biopsy to prove it or should we go gluten-free since she has the antibodies?

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Thats up to you. If you feel the blood test was enough for the diagnosis, then stop there.

LDJofDenver Apprentice
LDJofDenver
Posted

My daughter has tested positive for the antibodies for Celiac. Does she really need the biopsy to prove it or should we go gluten-free since she has the antibodies?

I'm not a medical person, but my G.I. doc said that, aside for it being confirmation of celiac disease, that they are also looking for certain markers and baselines, plus examining for esophageal damage that may have resulted from GERD (many celiacs also suffer from this), etc. You should ask the GI doc to elaborate.

It (the biopsy) may also be an important piece of medical evidence to have for your daughter's school, or for research studies/treatments, etc. I've seen a few trials that would only take celiacs who had been confirmed by small intestine biopsy.

Whether or not you decide on the endoscopy, your daughter's blood tests shows she has celiac disease (I don't believe there are false positives - you can search this forum and internet - blood test is quite definitive) so I think your medical provider will tell you that you should definitely begin the gluten free diet. The sooner you do, the sooner the damage stops and she begins to heal.

Plus, this is a genetic disease. She got the gene from one side of the family or the other. You may inquire about testing additional family members (including parents).

LDJofDenver Apprentice
LDJofDenver
Posted

Here is a link to the University of Chicago Celiac Center, it has tons of information (treatment, factsheets, video, etc):

Open Original Shared Link

They state on their site that endoscopy biopsy is necessary to confirm the diagnosis.

other sites with info on this:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

confused mom Rookie
confused mom
Posted
  • Author

What I didn't mention is that we had the endoscopy done in December and it showed minimal inflammation of the lining of the small intestine but no damage to the villi, so the doctor says it's "Latent Celiac" which means we caught it before it did any damage. She has been gluten-free for 4 months now but still has some stomach aches, which doctor says are from Irritable Bowel Syndrome. The doctor says we can try gluten for 4 months and then do another endoscopy to see if there is any damage. My question is why would we put her back on gluten if she has the antibodies, which tells me that her body is fighting the gluten and will eventually cause damage. What would be the point of putting her back on gluten and doing another endoscopy if we know that, eventually, she'll have damage -- we just don't know when the damage will occur?

mushroom Proficient
mushroom
Posted

Well, I personally think that is pretty dumb. Much more interesting would be to do another one now and see how it looks today after 4 months gluten free.

Her lingering stomach aches may be related to some other food that she does not tolerate well. For example, did you take her off lactose too? Because we often cannot handle lactose well until we fully heal. Or it could be something else that she reacts badly to. You could try a food and symptom diary and see if you can make any correlations. But I do think it would be cruel to subject her to further damage (not to mention pain) just to satisfy the doctor's curiosity.

confused mom Rookie
confused mom
Posted
  • Author

Well, I personally think that is pretty dumb. Much more interesting would be to do another one now and see how it looks today after 4 months gluten free.

Her lingering stomach aches may be related to some other food that she does not tolerate well. For example, did you take her off lactose too? Because we often cannot handle lactose well until we fully heal. Or it could be something else that she reacts badly to. You could try a food and symptom diary and see if you can make any correlations. But I do think it would be cruel to subject her to further damage (not to mention pain) just to satisfy the doctor's curiosity.

The doctor took another celiac panel 2 months after being gluten-free and he said her levels were "slightly high" but lower than the first time. They took another panel yesterday and we'll see what it shows. I wonder if there's any chance that the celiac panel was originally a false positive???

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

No, if repeated celiac panels when she is gluten free show that the antibodies are going down - well, that's what they are supposed to do. In the absence of gluten the antibodies are not needed and will gradually go away. Now if they had been going up, that would be a different story. It sounds to me that the diagnosis was correct and her progression is normal (improving) except for the tummy aches which may well be caused by some other food intolerance.

confused mom Rookie
confused mom
Posted
  • Author

No, if repeated celiac panels when she is gluten free show that the antibodies are going down - well, that's what they are supposed to do. In the absence of gluten the antibodies are not needed and will gradually go away. Now if they had been going up, that would be a different story. It sounds to me that the diagnosis was correct and her progression is normal (improving) except for the tummy aches which may well be caused by some other food intolerance.

Thank you for your input. I asked the doctor if my daughter is lactose intolerant and he said, based on the biopsy, that she is not deficient or intolerant of anything. I'm wondering if I should take her off lactose on my own and see what happens. That would be milk, cheese, yogurt....anything else?

mushroom Proficient
mushroom
Posted

If it were lactose, you may only need to remove milk, cream, ice cream, soft cheese. Enzymes and cultures 'digest' most ot the lactose in yogurt, cheese, etc., and the lactose is all squeezed out of butter pretty much. But it could be something other than lactose. Many of us whose guts are clean as a whistle have other food intolerances. I don't see how he could 'see' them :o Of course, I am no M.D., just a skeptic.

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.