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

Follow Up Appointment


Glutina

Recommended Posts

Glutina Rookie

Hello again everyone! I hope your gluten free lives are going well :)

I just wanted to update on the follow-up appointeny I had with my doc, as it was a bit surprising to me. Quick overview:

So...I was tested by a G.I. specialist in January for Celiac via bloodwork. (He immediately asked if I had ever been tested for it and about my family history and so on...he said I basically had all the symptoms.) I was thrilled that he took the time to think of what might be causing all my "washroom" and fatigue issues, and my general sense of feeling "off", not to mention the excruciatingly painful "attacks" I would get in my gut after eating certain things, more specifically soy sauce and imitation crab meat and bread. (All big gluten nono's!) So, he also set me up to have an ultrasound to rule out anything more severe with any organs or intestinal abnormalities, etc.

In the follow up appointment I had last friday, he confirmed that my celiac blood work was negative, but at the higher end of normal for something (ack---forget exactly what :blink: ) but not high enough to read celiac. He also said it was not the specific celiac-gluten antibody but something else that showed a high reactivity...? Anyhoo---the ultrasound was normal, thank goodness! I also told him that I had tried going gluten free after our first appointment when he mentioned possible celiac because I did not want to deal with my symptoms another day! He asked how it was going and I said GREAT! I asked him about the possiblilty of a false negative and he said that yes, those are quite possible, but here's where he surprised me: he said that since I am feeling better going gluten free, whether or not I have celiac, he owuld give the same advice to follow a gluten free diet. He also said that if I WANT the biopsy, he'll do it, but he left it up to me. Up to me! Wow!!! He also said something else that I had never thought of....that going gluten-free could be helping me to avoid other intolerances which ultimately leads to the same path: a normal, symptom-free life! He also said that going gluten free will complicate any further testing, and so he is also leaving that up to me!!! He said that since gluten free is working for me, I need to stick with it no matter if I have celiac (unlikely), gluten sensitivity or even wheat sensitivity. It is so nice to know that if I have any further concerns or if symptoms start up again that he has told me to come back and get further testing if I feel I need it.

I just thought I would share a positive GI specialist story with you all...and to remember that the diagnosis is ultimately the same for celiac disease or gluten sensitivity. AND, more importantly, that your health is in YOUR hands and not to stop at one doctor's opinion (or lack of one as I have also experienced with other misinformed doctors).

Your friend in this gluten free life,

-Glutina


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It sounds like you have a great doctor who is more concerned with the health of his patient than a lot of them are. Congrats. I think the home page here has a place for celiac savvy doctors to be listed, you may want to add him to the list.

Glutina Rookie

I agree that I am lucky in finding him as a specialist! I will add him to the list of "good ones" :)

-Glutina

Archived

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

  • 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. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

    2. - trents replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

    3. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      40

      My journey is it gluten or fiber?

    4. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

    5. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,900
    • Most Online (within 30 mins)
      7,748

    sai4a
    Newest Member
    sai4a
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
    • trents
      @Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general.  It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices. What is causing your swallowing problems? Is it the thrush?
    • knitty kitty
      The Benfotiamine and thiamax need magnesium to make life sustaining enzymes.  Yes, go ahead and take the Benfotiamine and Thiamax now and include the magnesium as soon as possible.   Yes, take the magnesium at breakfast, too.   I take my Benfotiamine and TTFD Thiamax and B Complex  at the beginning of breakfast.  I take the magnesium after I finish eating breakfast.  Yes, I take NeuroMag.  
    • Charlie1946
      @knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade.  Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice, I will try it all for sure, because everything I have tried OTC has done nothing 
    • Charlie1946
      Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think,  I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when I thought I had a sinus infection. So I got a z pack. Then I noticed my tongue was coated and it was white except right down the middle which was more brown and crusty, like the corners of my mouth. I also have dry mouth and I went way too long before I started treating it. So then I had some kind of huge pill and Nystatin mouthwash. My mother in law's new husband ( they live upstairs) started complaining of exactly the same symptoms as me. He went to urgent care, they said it wasn't thrush, it was shingles. We both went to our dentist's for cleanings, I don't have insurance so I really couldn't tell they cleaned my teeth at all. But she said my mouth looked good, all cleared up. I had a day and a half of no pain and then it came right back. So I got more pills and miracle mouthwash. There are times it feels like dry socket and times it feels like it's bleeding but it's not. I don't see any gum or facial swelling, I did see a couple of tiny ulcers on my bottom lip, roof of my mouth is still sore, and my tongue and cheeks are still a little coated. I am just at a loss. My mother in law's husband, they  took swabs and called back a week later and said it was a new herpes variant virus that is going around but not contagious. He was cured after a week! And I'm going on 3 months 😭
×
×
  • 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.