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

Dilemma! Advice Needed Please


Noodle

Recommended Posts

Noodle Newbie

Hi

I am still awaiting the results of a Celiac blood test taken 5 weeks ago (I am in the UK and they take ages!) my doctor told me that even if it comes back as negative she would like to arrange an endoscopy. My dilemma is this (and I am sure I am not the first to ask this!) I cant bear the thought of having to eat Gluten again for the test. In the UK you get referred for the Endoscopy and then you have to wait, could be a few weeks or a few months. I dont want to eat gluten again, especially not for an unknown amount of time. If the test is Positive why bother with the Endoscopy? and if it is negative - why bother?!

Can anyone share their views on this?

Thank you in advance, I have found this forum extremely helpful

T x


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast
Hi

I am still awaiting the results of a Celiac blood test taken 5 weeks ago (I am in the UK and they take ages!) my doctor told me that even if it comes back as negative she would like to arrange an endoscopy. My dilemma is this (and I am sure I am not the first to ask this!) I cant bear the thought of having to eat Gluten again for the test. In the UK you get referred for the Endoscopy and then you have to wait, could be a few weeks or a few months. I dont want to eat gluten again, especially not for an unknown amount of time. If the test is Positive why bother with the Endoscopy? and if it is negative - why bother?!

Can anyone share their views on this?

Thank you in advance, I have found this forum extremely helpful

T x

If you feel you dont need an "official" diagnosis, skip the tests and stay gluten-free if you feel better on the diet! If need a diagnosis-for instance to have your health plan cover your expenses, that's a different matter.

I had a positive blood test, started the diet, then went to see the GI. He said that he didn't think I have Celiacs, because we just did en endoscopy and he didnt see anything- he did an UPPER endoscopy of my stomach and esophogus! When I told him the diet had eliminated all my symptoms, he then wanted to do a bunch more tests. I told him to forget it!

The only thing that matters is if the diet works for you. You dont need an endoscopy to feel better, IMHO.

Noodle Newbie

Hi. Yes that was what I was hoping to do. Fortunately we don't have to have health cover or insurance in the UK but they usually insist on the Endoscopy. I read somewhere in a thread on this forum that there is a real threat of malignancies so that is why you should scope? I think I was a bit frightened by that.

I do feel better being gluten free but it has only been a few weeks I still experience stomach pain and more frequent bathroom trips (sorry TMI!) but I find now that spicy foods, soya and most of all eggs hurt me the most. Was eating eggs fine until about a month ago.....dont really understand why these would bother me so much now?

Finding it hard to adjust and frustrating as I am so scared to put anything in my mouth, feel sorry for my kids as I am not their fun Mum at the moment :(

Thanks for the advice. I am very grateful

T

Ahorsesoul Enthusiast

When doctors want to to more testing I always ask what will they do differently after seeing the test results?

Gemini Experienced
Hi. Yes that was what I was hoping to do. Fortunately we don't have to have health cover or insurance in the UK but they usually insist on the Endoscopy. I read somewhere in a thread on this forum that there is a real threat of malignancies so that is why you should scope? I think I was a bit frightened by that.

I do feel better being gluten free but it has only been a few weeks I still experience stomach pain and more frequent bathroom trips (sorry TMI!) but I find now that spicy foods, soya and most of all eggs hurt me the most. Was eating eggs fine until about a month ago.....dont really understand why these would bother me so much now?

Finding it hard to adjust and frustrating as I am so scared to put anything in my mouth, feel sorry for my kids as I am not their fun Mum at the moment :(

Thanks for the advice. I am very grateful

T

I wouldn't say there is a "real" threat of malignancy but there are those who would feel more comfortable if they have a picture of what their intestines look like.

Some need to see damage in order to stick to a gluten free diet. I think people need to do whatever makes them feel comfortable in obtaining a diagnosis but Celiacs should not fear having cancer any more than the general population. There is too much fear these days of that anyway. Most people do well on a strict gluten-free diet and recover just fine.

The reason you may notice more of a reaction to other foods is that once you cut out gluten, whatever additional intolerances/allergies you may have, come to the forefront. It's extremely common to have more than one food issue.....for many it's dairy. However, eggs and soy are high on the allergy spectrum so you may have to cut out more as you go along. Either that or you could request allergy testing on top of Celiac testing.

If you want to have the endo, then you could still cut out gluten for good and have the test done whenever they book it. Then it would be a matter of seeing how well you are healing and not necessarily to diagnose Celiac Disease. Let's face it, you're English so the odds of having Celiac Disease are way up there anyway. ;) It all depends on how important an official diagnosis is to you.

I was diagnosed via blood work and refused the endoscopy because I was so deathly ill, I couldn't face eating gluten for one more meal. Actually, I wasn't even eating at the time so I was getting desperate. I had an official diagnosis with the blood work and have done so well on the diet and with my recovery, I have not felt the need to be scoped. Good luck!

Noodle Newbie

Thanks Guys.

Very helpful and that would certainly explain the egg allergy. I guess spicy foods would set me off because they are irritants rather than allergens?

Why does being English make me more predisposed to Celiac?

Thankfully alcohol still remains pain free!!!!! my doc is treating me with proton pump inhibitors at the moment as she is wondering if it may be an ulcer instead but if it was surely alcohol would be impossible? Don't know whether to stop the drugs as they aren't making much of a difference.

Thanks for your input

T

Rondar2001 Apprentice

One thing to consider with the endoscopy, your doctor may be looking for other things besides just celiac disease, especially in light of your other food issues.

I would confirm exactly what they might be considering before turning down the endoscopy.

Good luck and hope it goes well for you.


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

I believe the reference to cancers was given to a person with a family history of cancer. If you don't have that history, I wouldn't worry about that aspect of it.

I also would ask the dr's reasoning behind the test. Maybe there is something he's looking for that you didn't consider.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,186
    • Most Online (within 30 mins)
      7,748

    Kris46
    Newest Member
    Kris46
    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

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • 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.
×
×
  • Create New...