Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Do I Need To See A Gi


Heather S

Recommended Posts

Heather S Newbie

I have recently been diagnosed with celiac through a positive gliadin peptide result. I've been gluten-free for two months and feel ten years younger! My doctor is recommending I see a GI, but I have terrible insurance and have paid so much out of pocket to get to this point. My question is can I live my gluten-free life and not see the GI? Won't that be the end result, anyway?

I'm not cheap, and my health is important to me, but I can't afford to get the same answer.


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



Celiac.com Sponsor (A8-M):



home-based-mom Contributor
I have recently been diagnosed with celiac through a positive gliadin peptide result. I've been gluten-free for two months and feel ten years younger! My doctor is recommending I see a GI, but I have terrible insurance and have paid so much out of pocket to get to this point. My question is can I live my gluten-free life and not see the GI? Won't that be the end result, anyway?

I'm not cheap, and my health is important to me, but I can't afford to get the same answer.

Do you know why your doctor wants you to see a GI? If it's to do a biopsy to confirm the blood test, it might already be too late as you have begun to heal already. Are there other issues?

If your doctor just wants you to have a biopsy and wants the GI to conform that, I think I might politely decline for the above reason. Paying out more money just to be told what you already know is not my idea of a wise use of limited resources.

Heather S Newbie
Do you know why your doctor wants you to see a GI? If it's to do a biopsy to confirm the blood test, it might already be too late as you have begun to heal already. Are there other issues?

If your doctor just wants you to have a biopsy and wants the GI to conform that, I think I might politely decline for the above reason. Paying out more money just to be told what you already know is not my idea of a wise use of limited resources.

kbtoyssni Contributor

Many doctors see a positive biopsy as the "gold standard" diagnosis. So you doc may want you to get that test done. BUT you already have a positive diagnosis so it's not necessary to get a scope done. I would ask your doc if there's another reason to get a scope - sometimes a doc may want to look for other issues - but it's unlikely. Also, with being gluten-free for two months already, you've started to heal and will probably get a negative result from the scope. A scope can only re-confirm what the blood test has already told you or show that you've started to heal which you already know since you feel so much better.

Heather S Newbie

Thanks, this was helpful. My doc is not a GI (he's an immunologist) and I think he just wanted to make sure I was seeing someone who specializes in this. But my take on it is that I feel better on the gluten-free diet and that I should just stick with that and be healthy.

I actually threw a little party when I got my positive test result. I've been chasing down this mysterious illness for 17 years, believe it or not. Now I know the enemy and he's not so big. I'd been tested three times for Lupus, twice for rhuematoid arthritis, and I'd been told I had endometreosis (pain in my abdomen) and should have a hysterectomy. Every time I went to the doctor they did a round of blood tests, but not specifically for Celiac, and I'd come back deficient in some additional vitamin or mineral (amassing a long list of deficiencies over the years), but nothing more. I was so frustrated. Understanding what the problem is and that with proper care I can be healthy has changed my whole life. I'm 42 and felt like I was 62 before my diagnosis. I'm now thinking of hiking the Pacific Crest trail from Washington to California next summer. Couldn't have fathomed that a couple of months ago. Yippee!!

kbtoyssni Contributor
I actually threw a little party when I got my positive test result. I've been chasing down this mysterious illness for 17 years, believe it or not. Now I know the enemy and he's not so big. I'd been tested three times for Lupus, twice for rhuematoid arthritis, and I'd been told I had endometreosis (pain in my abdomen) and should have a hysterectomy. Every time I went to the doctor they did a round of blood tests, but not specifically for Celiac, and I'd come back deficient in some additional vitamin or mineral (amassing a long list of deficiencies over the years), but nothing more. I was so frustrated. Understanding what the problem is and that with proper care I can be healthy has changed my whole life. I'm 42 and felt like I was 62 before my diagnosis. I'm now thinking of hiking the Pacific Crest trail from Washington to California next summer. Couldn't have fathomed that a couple of months ago. Yippee!!

Good for you! I throw myself a party every year on my gluten-free anniversary. It's like a second birthday to me :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,185
    • Most Online (within 30 mins)
      7,748

    wmkoehler
    Newest Member
    wmkoehler
    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

    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
×
×
  • Create New...