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

Newbie Questons About Testing


BUGTWIG

Recommended Posts

BUGTWIG Rookie

Hello

I have been eating wheat free for over 7 months. I feel a whole lot better not eating it. I get sick to my stomach and awful cramps followed by diarehha. I also get a migraine.

I choose to eat this way because I feel better. There are days that I still have attacks and had not eaten any wheat. I brought this up to my doctor and he brought up celiac. The problem he said I have to start eating wheat for the tests to be accurate. This is something I will not do to my self.

I talked about treatment being dietary why can't I just change the way I eat and not get an official diagnoses. Is this Possible??

I have since been eating gluten free. And I haven't had an attack.

In my past I have been diagnosed with Gurd IBS spastic colon and others. None of these diagnoses have taken care of the problem. I have taken medicines and made dietary changes. Still had attacks.

I am hopeful at the prospect that this treatment will help me. I am just not sure how important an official diagnoses is?

Thank you All

Jyn


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

As you noted, you don't need an official diagnosis to eat the way you want, so there's unlikely to be a really good reason for a diagnosis. There's a question about whether or not, if you were hospitalized, but able to eat "real" food (non-IV nutrition, for instance) that you'd be able to 'demand' gluten free food, but that's about it. You can talk to your doctor about having it recorded that it's suspected you're celiac based on dietary results, but there are downsides to a formal diagnosis as well - in some cases (some people in the US, for instance, have been denied insurance).

MrsLady Newbie

I am new to using a computer to "chat" about stuff. So forgive me if I don't seem to know what I'm doing.

I need some help. I had an endoscopy that showed the "villi were blunted over" so bloodwork was done. The bloodwork was negative to celiac antibodies. I know this sounds strange to wish it was positive, but I'd really like to know what is wrong with me. I've been having medical tests for about 6 years (I'm 50 now). About 2 years ago I was finally diagnosed with a Vitamin D deficiency (osteomalacia) - the symptoms were the same as fibromyalgia - a prior diagnosis. As soon as I started getting sunshine without sunscreen I started feeling better. However, even though I can manage the pain with sunshine, I still have pain in my upper right side and often get stomach upset after I eat. There was never any explanation as to why I had the Vit. D deficiency, and Celiac would certainly explain the problem. My 23 year old daughter actually has more symptoms of Celiac than I do. We have the same doctor. Any suggestions on where to go next or what to do next?

Thanks so much for your advice to come!

mellajane Explorer

I had been sick since seven with vomitting hot cold sweats for days I am now 30. Someone a Dr. I was working for had seen me sick and suggested i stop eating wheat .I noticed a difference immedietly. At the time no one Dr. suggested that the test would come back negative when not eating wheat. I have never felt better and Dr.s still want to argue that I do not have celiac. This is the only thing in 20 years at least that has helped. Im gonna tell you it is a hard transition. If you are still getting sick there is something you are still using that has wheat or gluten in it. Remember read everything you touch or consume down to your cosmetics, shampoos ,lotions, its crazy....If you are feeling better stick to it. I have been gluten and wheat free for 3 years now. It does get better. Good luck

Hello

I have been eating wheat free for over 7 months. I feel a whole lot better not eating it. I get sick to my stomach and awful cramps followed by diarehha. I also get a migraine.

I choose to eat this way because I feel better. There are days that I still have attacks and had not eaten any wheat. I brought this up to my doctor and he brought up celiac. The problem he said I have to start eating wheat for the tests to be accurate. This is something I will not do to my self.

I talked about treatment being dietary why can't I just change the way I eat and not get an official diagnoses. Is this Possible??

I have since been eating gluten free. And I haven't had an attack.

In my past I have been diagnosed with Gurd IBS spastic colon and others. None of these diagnoses have taken care of the problem. I have taken medicines and made dietary changes. Still had attacks.

I am hopeful at the prospect that this treatment will help me. I am just not sure how important an official diagnoses is?

Thank you All

Jyn

Guhlia Rising Star
Hello

I have been eating wheat free for over 7 months. I feel a whole lot better not eating it. I get sick to my stomach and awful cramps followed by diarehha. I also get a migraine.

I choose to eat this way because I feel better. There are days that I still have attacks and had not eaten any wheat. I brought this up to my doctor and he brought up celiac. The problem he said I have to start eating wheat for the tests to be accurate. This is something I will not do to my self.

I talked about treatment being dietary why can't I just change the way I eat and not get an official diagnoses. Is this Possible??

I have since been eating gluten free. And I haven't had an attack.

In my past I have been diagnosed with Gurd IBS spastic colon and others. None of these diagnoses have taken care of the problem. I have taken medicines and made dietary changes. Still had attacks.

I am hopeful at the prospect that this treatment will help me. I am just not sure how important an official diagnoses is?

Thank you All

Jyn

So long as you're out of the school system, I'm assuming you are, a diagnosis probably isn't necessary. Actually, not having a diagnosis, as Tiffany stated, may save you some headaches in the long run. Celiac can make it very hard to get life/health insurances in the US. You may want to work with your doctor at getting gluten intolerant added to your charts so that if you ever have a hospital stay they will feed you properly, but other than that you likely won't need a diagnosis.

Archived

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

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

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      I agree with @trents, but thank you for bringing this up here!
    • Jane02
      Hi @trents, yes I've had my levels checked in Dec 2025 which revealed vit D deficiency. I considered eggs although they only contain about 45 IU vitamin D/egg. I need 2000 IU vitamin D for maintenance as per my doctor. Although now, I likely need way more than that to treat the deficiency. My doctor has yet to advise me on dosing for deficiency. I've also considered cod liver oil, although again, if it's processed in a facility that has gluten, especially on flour form, I worried to test it, even if they have protocols in place to mitigate cross-contamination with gluten.
    • trents
      Welcome to celiac.com, @Jane02! Have you had your serum D levels checked for deficiency/sufficiency? What about cod liver oil? Egg yolks can also be a good source of vitamin D.
    • Jane02
      Hello, I'm very discouraged. I've been trying to find a safe vitamin mineral supplement brand for months and am tired of testing one after the other and experiencing my typical 'glutening' reactions. I'm really feeling the nutritional deficiencies set in. I'm doing the best I can to get these nutrients from my food, although it's impossible for me to intake enough vitamin D as I can't have dairy and have insufficient sun exposure in the northern hemisphere. I've tried B Complex from Country Life (certified gluten-free) - horrible reaction. I've tried Metagenics vitamin D tab (certified glute-free) - bad reaction. I've tried liquid vitamin D Thorne and D Drops - reactions were mild since I tried a drop of a drop. I understand there could be other things I'm reacting to in my diet, although my diet/intake is pretty consistent with minimal variables so I do think it's something in these supplements. I understand I could be reacting to the active ingredient vitamin/mineral itself or even the filler ingredients. I tried the vitamin D drops since the only filler ingredient is coconut oil, in some brands, which I know I can tolerate really well on its own - I cook with coconut oil frequently and have no 'glutening' reactions at all. Perhaps I'm reacting to the vitamin D itself, although I eat fatty fish every few days, an entire fillet with no 'glutening' reactions, which contains anywhere between 400-600 IU per fillet so I shouldn't be sensitive to vitamin D. All this to say, I'm desperately looking for at least a safe vitamin D supplement. Does anyone know of a safe vitamin D supplement brand? I'd love to know if there are any supplement brands that have absolutely no gluten (especially in flour form) in their facilities. I've heard of Kirkman having no grains in their facility - I may try this brand. Has anyone reacted to this brand?   
    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
×
×
  • 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.