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

Md Wants To Do Biopsy Now

jkr

By jkr
in Coping with Celiac Disease

Recommended Posts

jkr Apprentice
jkr
Posted

Hello,

I've been reading all of the posts for a while and thought I would finally share some thoughts. I had iron deficiency anemia (ferritin was 9 with & low H & H) last year and underwent the colonoscopy and upper endoscopy. I suspected celiac but the doctor really did not think so because he said I didn't have diarrhea! But I had every other symptom. Anyway, he didn't do biopsies. I told him I wanted the blood test so he ordered the TTG antibodies. This was last November. (the TTG IGA was high, 67); I work in a MD office with a lab so I got the results before him. I just started the gluten-free diet because I knew in my heart I had celiac. Well, I finally went to see him yesterday because I've had some stomach issues (burning, cramps). Now he wants to do the biopsy and of course he wants me to go back to eating gluten for six weeks. I'm so hesitant to go back to eating gluten. From reading these posts I know some of you would say forget it, the blood test is enough. I'm just on the fence about it.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I can't write what I would like to about this doctor. I personally would find another GI and I would get my hands on complete records from his office and any and all procedures you had done. You may find that there were strong indications of celiac even without the biopsies as there are changes that can be seen in some of us but for him to not even take one biopsy was in mind negligent.

If you are feeling better on the diet at this point I would just continue with it. When you go to your new GI doctor if he thinks an endo is required I would consider having it done to rule out any other issues but the choice whether to go back on gluten for 6 weeks to 3 months is up to you. If your symptoms from gluten are severe I wouldn't.

Many of us do have other intolerances in addition to the gluten. Casien and soy being high on the list. For me soy was the direct cause of my continued stomach pain and my reaction to soy is very different to that from gluten. You could try eliminating soy and milk casein yourself and see what happens. Pepto bismal helps get rid of that pain immediately for me. I tryed that before using the acid blockers that my ex-GI wanted to put me on.

jkr Apprentice
jkr
Posted
  • Author

What type of foods have soy in it?

ravenwoodglass Mentor
ravenwoodglass
Posted
What type of foods have soy in it?

A lot. As with gluten you will need to read the labels. A great deal of the gluten free baked goods have soy for example. Soy is one of the 8 major allergens so it has to be on the ingedient label if it is there. The most troublesome for me was to find a margerine that was soy and casien free. I finally gave up and for a few months used Ghee, which is clarified butter or coconut oil for baking. I now use good old fashioned butter but liked the flavor of the coconut shortning so much I still use it.

mattathayde Apprentice
mattathayde
Posted

my doc told me "if gluten free is working for you then stick to it, there is no point to make you sick for a month to get a blood test that will just confirm what we already know, and the only thing its going to change is your insurance premiums"

i had gotten diagnosed by my alternative medicine doc and went gluten free before i knew about getting any blood test or biopsy but they have a snow balls chance in hell of getting me to eat gluten to just get a freaking test

-matt

mushroom Proficient
mushroom
Posted
What type of foods have soy in it?

More than you can imagine :o

You don't realize until you start looking for it. For example, it seems most gluten free baked goods contain soy (that's what rose up and bit me and made me so sensitive to it). You will find soy lecithin used as an emulsifier in many foods, like chocolate :( Now some people are able to tolerate soy lecithin; I am not one of them unfortunately. Soy also hides as hydrolized vegetable protein.; edamame beans are fresh soy beans. You will find soy bean oil in many salad dressings and soy is in most asian sauces (not just soy sauce). Once you start looking for it you will find it on almost as many labels as gluten, I'm sorry to say.But you can live without it :)

LDJofDenver Apprentice
LDJofDenver
Posted
Hello,

I've been reading all of the posts for a while and thought I would finally share some thoughts. I had iron deficiency anemia (ferritin was 9 with & low H & H) last year and underwent the colonoscopy and upper endoscopy. I suspected celiac but the doctor really did not think so because he said I didn't have diarrhea! But I had every other symptom. Anyway, he didn't do biopsies. I told him I wanted the blood test so he ordered the TTG antibodies. This was last November. (the TTG IGA was high, 67); I work in a MD office with a lab so I got the results before him. I just started the gluten-free diet because I knew in my heart I had celiac. Well, I finally went to see him yesterday because I've had some stomach issues (burning, cramps). Now he wants to do the biopsy and of course he wants me to go back to eating gluten for six weeks. I'm so hesitant to go back to eating gluten. From reading these posts I know some of you would say forget it, the blood test is enough. I'm just on the fence about it.

I'd also consider a different G.I. doc. And you may not have to go back on gluten for the endoscopic small bowel biopsy. I don't know how old you are, but I was 56 when diagnosed and everything doesn't heal in a couple of months (more like a year, possibly more when diagnosed later in life).

My GI doc thought there'd still be plenty of evidence of it, even after 7 months eating gluten free. She was right, biopsies confirmed the celiac and just now starting to showing signs of regrowth of villi, in response to gluten free diet. If you have a good GI, they'll know what is best.

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

Celiac.com Sponsor (A8-M):


jkr Apprentice
jkr
Posted
  • Author
I'd also consider a different G.I. doc. And you may not have to go back on gluten for the endoscopic small bowel biopsy. I don't know how old you are, but I was 56 when diagnosed and everything doesn't heal in a couple of months (more like a year, possibly more when diagnosed later in life).

My GI doc thought there'd still be plenty of evidence of it, even after 7 months eating gluten free. She was right, biopsies confirmed the celiac and just now starting to showing signs of regrowth of villi, in response to gluten free diet. If you have a good GI, they'll know what is best.

Thanks for the info. I haven't been gluten free for as long as you were. I will be 50 next week and I'm sure I've had this since I was a child.

LDJofDenver Apprentice
LDJofDenver
Posted
Thanks for the info. I haven't been gluten free for as long as you were. I will be 50 next week and I'm sure I've had this since I was a child.

I'm sure mine was there throughout childhood as well . Sounds like we're in the same boat (lots of celiacs in our boat!).

My GI doc also had ordered blood work (re-test) at the 6 month mark, and even that wasn't normal yet. And I'm careful (not to say I haven't been occasionally glutened accidentally during that time). My levels had gone down, but still are not normal. She said it takes a while, especially given my age at diagnosis (that again), and to keep doing what I'm doing, it was going in the right direction. Initially when she said she wanted to do the endoscopy I told her there was no way I could go back on gluten, it whams me so violently now whenever it sneaks into something I've eaten. And, as I said before, she said I didn't have to. That I wouldn't be healed in this short a period of time (sure wasn't!).

Do you have a local Celiac Group of some sort? THings like that often also have links to GI docs in your area that specialize in (or at least have a high knowledge level of) celiac disease.

Archived

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

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


  • Member Statistics

    • Total Members
      131,961
    • Most Online (within 30 mins)
      7,748
    Noa
    Newest Member
    Noa
    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.