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

Seeing The Gi Tomorrow


Soccer-Mom2405

Recommended Posts

Soccer-Mom2405 Newbie

Finally, my appt is almost here!!!  Not exactly sure what to expect tomorrow but glad it’s almost here.  Made this appt at the request of my doctor after my blood tests came back negative but genetic tests were positive.  Low carbed for 6 weeks prior to blood tests and felt great.  Ate “normal” for 2 weeks before giving up and having the blood tests.  I know I should have eating gluten longer than 2 weeks.  After several late night episodes, I hastily made the decision to have the test done then.  Now, I’m just ready for a diagnosis (good or bad) so I can move on.  I have felt so bad for the last 4 weeks.  Tired of being tired and feeling puny all the time.  Tired of the many gastro issues.  Tired of the all it.  Uuuggghhh!!!!!

 

Sorry…I know I’m whining.  L I’m beginning to feel like Debbie Downer.


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



Celiac.com Sponsor (A8-M):



moosemalibu Collaborator

Good luck with your appointment. I too am sick and tired of being sick and tired and the GI issues... I'm ready for that to resolve too.

 

This is the place to go to when you need to vent your frustration. Sometimes I feel guilty about talking about my disease - I can't change it and it effects daily life - it's hard not to talk about. But the non-celiacs are probably going to get tired of it. My mom advised me last week to "not talk about the diet so much with Phil(my boyfriend) because it may push him away" Thanks mom. And btw - Phil is supportive and has fully accepted with enthusiasm the gluten-free household rule. Bless him. Now once I remove all the cross contamination issues (mostly tupperware, cooking utensils (wood) and nonstick pans) I think we are finally going to be on the right track.

nvsmom Community Regular

Good luck. Let us know how it goes.  :)

Soccer-Mom2405 Newbie

Good Luck Jamie!

 

Thanks Nicole!

 

I had my son's blood tests done today.  Should knows those results in 2 weeks.

Soccer-Mom2405 Newbie

Sorry for that rant and Sorry this is long.

 

A little disappointed in my GI doctor and who knows maybe he's right with everything he said but it just didn’t sound right and then again I’m no expert. 

 

We discussed all my symptoms and he reviewed my blood tests results.  He explained that just because I have the genes does not mean I have celiac disease, which I already knew.  Then, he said you must have 3 things to get diagnosed with celiac disease: 1) symptoms, 2) positive blood tests, and 3) positive biopsy.  He said since I didn't have a positive blood test, then he doesn't think celiac is my issue and started discussing fibromyalgia and crohn’s disease.  Kept pushing those even when I explained that when I ate low carb, I had NO ISSUES… NONE.  Now correct me if I’m wrong because I know nothing about crohns disease or fibromyalgia but would eliminating carbs correct crohn’s or fibromyalgia? 

 

Fibromyalgia - really??  I don’t think so.  My back hurts because I have bulging discs and degenerative disc disease and my knees hurts because I have too much weight on them and my patella’s sit too high (both my children have the same issue and must wear braces for sports).  He wouldn’t listen to those reasons.

 

Crohn’s Disease – not sure.  After looking it up in the internet, I have some of the symptoms but not many.  Mainly abdominal pain and cramping.

 

He has set me up with an upper and lower GI and told me if both of those didn't find anything then it's probably just IBS.  Told me I was probably lactose intolerant and how to do a self test on that.  We discussed the possibility of a vitamin D deficiency and told he to have it checked the next time I had blood tests done.  I asked what other vitamins I should check and he said none.  Vitamin D was the one he thought I was low on.

 

Am I crazy?  Should I be concerned or not?  I feel like because my blood tests were negative, he has already made up his mind that I don’t have celiac even if the biopsy come back positive.

bartfull Rising Star

Show him this from Johns Hopkins, and point out that at the bottom of the list of symptoms there is a bit about how some people are asymptomatic. Ask him to google "silent celiac". Then ask him to google "false negative celiac blood test".

 

Open Original Shared Link

 

Or better yet, find another doctor.

 

Or you could just go gluten-free on your own. Many of us are self-diagnosed. Since you know you have the genes you already are aware that your first degree relatives are at risk. Unless you think a definitive diagnosis will help you stick to the diet, you don't need a diagnosis, IMO.

Soccer-Mom2405 Newbie

I've already made up my mind to eliminate gluten regardless of a diagnosis and I agree with the new doctor.  I was very disappointed with him.  I completely understand that celiac may not be my issue but for him to disregard it so quickly was very aggravating.  I think I will stick with having the upper and lower GI Tuesday, couldn't hurt since I've never had either of them. 


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Good luck with the scopes. Hopefully the results will be very clear one way or the other. If you can, try to push for many samples to be taken - I believe six or more is considered adequate. Try to eat some gluten over the weekend if you are able...

 

Hope it goes well.

Soccer-Mom2405 Newbie

Thanks Nicole.  That is the one thing I failed to ask yesterday, the number of samples he would take.  I will find out before having the scope. 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,191
    • Most Online (within 30 mins)
      7,748

    teresa1955
    Newest Member
    teresa1955
    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...