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

Negative Blood Tests

jessicajane

Recommended Posts

jessicajane Newbie
jessicajane
Posted

I was so sure that celiac was the right diagnosis that I started a close-to-gluten-free diet while waiting for the blood test results...which were negative. Still, the improvement in my many symptoms was dramatic. In less than 1 week.

1. Is there any compelling reason to have an absolute medical diagnosis?

2. Is it critical to be 100% gluten-free compliant to prevent the small intestine damage that leads to cancer?

3. Is it best to see a nutritionist, GI doctor, allergist...?

4. Is it really bad to have celiac disease on your medical record for future coverage? Would it be better to be undiagnosed for insurance reasons?

5. Are there any particular vitamins, minerals, herbs that help?

6. Would there be any harm in taking IBS remedies (lactobacillus)? Digestive Advantage IBS was very helpful for the digestive tract symptoms even before starting the gluten-free diet.

Any response to any part would be greatly appreciated! I've learned quite a lot from reading posts already.

JJ

negative blood test 2/25/05

close-to-gluten-free since 2/26/05

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

Celiac.com Sponsor (A8-M):


celiac3270 Collaborator
celiac3270
Posted

To answer your questions:

1. You are better off getting an official diagnosis if that is at all possible. So if you're on gluten right now or only gluten-free a few days, you might consider getting some bloodwork done before your intestines heal. You need an official diagnosis if you are going to do the tax deduction, though if you'd do that, food/medical must take up over 7.5% of your income...this won't apply to most. The military can't and won't accomodate to the gluten-free diet, so you cannot serve, but only if you have a diagnosis to prove that you must eat gluten-free. This is also important with schools--but if none of these things are important, then you don't need an official diagnosis at all--provided that you feel strongly enough about having celiac that you're willing to follow this diet for the rest of your life.

2. Yes--everyone makes mistakes once in a while, but if you are only half-gluten-free or you cheat on the diet, you are far more likely to get osteoporosis, cancer, etc.

3. GI doctor for medical reasons, nutritionist if you have difficulty with the gluten-free diet--they tend not to be too helpful.

4. Probably--there are stories here about insurance going up due to celiac

5. Depends on what deficiencies you might have. Folic acid is good to aid in digestion and a lot of people here take that. A daily vitamin is good, too--centrum is gluten-free.

6. I don't know about IBS :)

-celiac3270

KaitiUSA Enthusiast
KaitiUSA
Posted

1.A medical diagnosis can be good and bad. Insurance makes it bad but tax deduction makes it good.

2. It is so important to follow the diet 100%. Everyone has mistakes sometimes but if you are not following the diet you will most likely get other compications later.

3. GI doctor I agree is the best.

4. I have heard of a lot of insurance problems that can come with really any medical diagnosis. They consider it a complication so it might be hard to find insurance to cover or the price will be higher.

5. Vitamins are good for anyone. I take liquid ones I have heard they are better absorbed. B vitamins are good, probiotics and enzymes are essential.

6. Is what you are taking for IBS natural or prescribed. I would worry about if it is gluten free or not. Lactobacillus if my mind is correct is a probiotic right? Those would be very good to have still.

Good luck with everything :D

jessicajane Newbie
jessicajane
Posted
  • Author

Thanks so much to both of you for the encouragement and good information.

One more question: is it accurate to say that if you are gluten sensitive or intolerant, you have celiac disease? or are there gluten-related conditions other than celiac disease?

I am hoping to be able to figure out what exactly is wrong with me so that I can do the right thing to treat it...I guess I will have to find a specialist. My doctor has admitted that he doesn't see much celiac disease...I'm lucky he even thought of it as a possibility, but with a negative test, he's satisfied I don't have it. I know that the change in diet made an immediate difference, so I'm not ready to go back to my former diet, and I'm not ready to give up on a definitive diagnosis!

I'm in the NYC area -- I see you are too, celiac3270. Any recommendations for good celiac disease medical professionals?

celiac3270 Collaborator
celiac3270
Posted

I think you can have gluten intolerance, which isn't full-blown celiac--but you still need to be on a gluten-free diet, regardless.

Of course, you can have allergies to wheat or rye, etc., but that's completely unrelated to celiac disease.

Dr. Green is the number one celiac specialist in the country and he's associated with Columbia Presbyterian--the most prestigious doctor you can go to--I'm only 14, so I'm too young to see him and my GI only works with children/teens, though he's fabulous. That's the only doctor recommendation I can give you, though Columbia Presbyterian is the most celiac-knowledgable hospital you can go to.

jessicajane Newbie
jessicajane
Posted
  • Author

celiac3270 -

I've heard of Dr. Green and am going to try to get an appointment. Also Dr. Suzi Lee at Columbia-Pres. I feel I need to rule out celiac disease or embrace it completely! But thanks for making the point that either condition requires the same response - looks like I'm going to be embracing the gluten-free diet no matter what.

You are clearly a remarkable young man; the service you provide with your expert advice is extremely important and much appreciated.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,885
    • Most Online (within 30 mins)
      7,748
    susieq312
    Newest Member
    susieq312
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      Testing for celiac

      By Bebee · Posted

      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...