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

Where Do I Go From Here?


Kelynn

Recommended Posts

Kelynn Apprentice

For about 2 weeks now I haven't been eating any gluten. I had been having stomach issues and felt absolutely terrible for a few months and finally 'connected the dots' and thought it was bread, pasta, etc that was bothering my stomach. Since I have stopped eating gluten I feel like a whole new person- I feel wonderful!

While I was at the doctor (just my regular doctor, not a specialist) he did some blood work and my thyroid levels came back high. My TSH level was 3.8 and he said I had a LOT of antibodies in my thyroid. After I mentioned my theory on the gluten (that I'm gluten-intolerant/possibly have Celiac's) he said that it would make sense, and that my thyroid level and the amount of antibodies are probably because my body has been building antibodies to fight off the gluten I have been eating. So, he did another round of blood tests to see if perhaps I had Celiac's. However, I had not been eating gluten for a week or so before the blood test- he said it wouldn't affect the results. I've also heard that the blood tests are (or can be) pretty inaccurate. He said that depending on the results of the blood test, he may send me off to GI.

The doctor's assistant called Monday and said "Your blood test results are normal so you're all set. Have a good day" So, naturally I said "What do you mean 'I'm all set? Where do we go from here?'" she supposedly checked with the doctor and came back on the phone and said "Um he said to keep eating the same diet." "You mean keep eating 100% gluten free?" I asked. She said "yup!" and that was the end of the conversation. No follow up appointment, no reasoning, etc- as if this isn't a complete and total lifestyle change. You would have thought she told me "oh um just don't eat apples for a few weeks" or something silly like that. Besides, if I wasn't the type of person to go out and research things to no end, how would I even know what "gluten-free" means?

So, I called and made an appointment for tomorrow to pursue this further. Ideally, I would like to ask him for a referral to a GI doctor. I will not go back to eating gluten for fear that it will make me terribly sick again, but at the same time, I'm going to need something (aka a diagnosis) a little bit more firm then "Um, just don't eat gluten." Well, for how long- the rest of my life? With no actual medical reasoning behind it?

From what I understand, the "normal" blood test results mean just about nothing. So, where do I go from here? What's my next step? I just want to be sure that the gluten issue (the doctor and I both suspect it's a gluten issue that was causing my symptoms, especially since they vanished when I stopped eating gluten) is the ONLY issue. I don't want to find out down the road that something else is 'wrong with me' and that it wasn't a gluten issue all along.

Anyhow, any advice will be appreciated. Thank you!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

If you want to see a GI doctor for an endo you HAVE to get back on gluten. If the thought of that sends shudders down your spine with the thought of how sick it will make you then there is no reason not to just follow your GP's advice and keep up the diet.

Sometimes our body tells us pretty clearly what the answer is even when testing can not. If you feel better gluten free there is no reason not to stay that way. Chances are at some point you will get glutened and your bodies reaction to that will tell you in no uncertain terms that you are doing the right thing. If you wanted you could do a gluten challenge for a week and see what happens, stopping it when you react. Exclusion of gluten, feeling better and then becoming sick again with a challenge is also pretty diagnostic.

OptimisticMom42 Apprentice

Yeah that was the reaction we got also... problem solved.... no follow up needed unless you have further problems. If you doubt your dx have a sandwich....... OK nobody said that but that's how it felt.

But on a nicer note. This is less of a change than it seems at first. Eating a rice and corn based diet instead of a wheat based diet makes us just like most of the world.

Welcome to the forum, RA

Kelynn Apprentice

It's probably going to sound strange, but initially I was totally against consuming even another bite of gluten as long as I live because it simply wasn't worth risking it. However, now I'm feeling like I can try the gluten-challenge, and see what happens. If I'm terribly sick (like I have been in the past) then I'll go from there. If I'm sick, but I can deal with it, then it might be worth it in the long run to be able to know for certain what's going on, and to have a diagnosis.

Thanks for your advice and help everyone.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748

    Leeila
    Newest Member
    Leeila
    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...