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

Do They Know What They're Doing?

gabrielle

Recommended Posts

gabrielle Contributor
gabrielle
Posted

I have lost 20 pounds since last year and my doctors assumed that perhaps i had a gluten intolerance. Since December '04 i've had multiple blood test, that no one will explain to me- all they told me was that a test came back positive and i should condsider a gluten-free lifestyle. I finally went to a GI dr. and he gave me a sprue panel test, and i am awaiting the results. I really do not want to get the biopsy done, is that really necessary??? I am finding that I feel better on a gluten-free diet, but is it all in my mind? I'm worried that they diagnosed me with Celiac Disease, and it may not be the case. I do not understand how you can have a Gluten intolerance but not be celiac.... Can someone please explain this to me..... Please!! I'm desperate.

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

Celiac.com Sponsor (A8-M):


MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Some people can have allergies to gluten or wheat and some people can have Celiac Disease where the villi in the intestines are damaged by eating gluten.

You do not have to have the biopsy if you have positive blood tests and feel good with the diet. I never had the biopsy but my brother did (he wanted more proof). It's up to you.

If you feel like your doctors are giving you a headache demand answers or get a a new doctor who can explan things to you and make you happy.

gabrielle Contributor
gabrielle
Posted
  • Author

thank you very much for responding. i really appreciate it.

KaitiUSA Enthusiast
KaitiUSA
Posted

You have on your signature 3 months gluten-free...if your doctor just took blood then they would come back negative because you have been gluten-free. Also I never had a biopsy because my blood tests were proof enough for my doctor, GI doctor, and me. We also request copies of blood tests...you need to be firm with the doctor and demand them explain it to you if you do not understand what is going on. Good luck :D

gabrielle Contributor
gabrielle
Posted
  • Author

Thank you for the replies. But the reason I am so confused is because my family doctor gave me a blood test (ANA screen?) and that came back positive- with that he said that I had Celiac disease. I had no idea what it was or what i had to do- so they told me to be on a gluten-free diet until i could see a GI doctor- This was in January. I just got my Sprue panel yesterday and I am worried since i have been gluten-free that it will be negative- and they will want the biopsy.... but im scared! :( Will the blood test def. be negative after roughly 3 months?

KaitiUSA Enthusiast
KaitiUSA
Posted

Yep the blood test would be back negative if you were gluten free for 3 months. That's how they monitor compliance of some people because going gluten free brings the levels down.

I never had a biopsy but some people opt to. My doctor and I found the blood test to be more than enough evidence that I had it.

Your biopsy may come back negative as well. If you had minor damage to begin with and have been gluten free that could have healed. They recommend you being on gluten for about 3 months straight with a gluten filled diet when testing.

If you didn't want to do that check out an Enterolab..they do not require you to get back on gluten. Open Original Shared Link This is their website and it might help you out a bit with questions you have.

If you were told you have celiac and had positive effects from the diet then why do you need more testing?

tarnalberry Community Regular
tarnalberry
Posted

I would encourage you to go back to your doctor and get the results from him/her. (You can have the office mail you the records if you're worried about getting them from him/her in person.) Then you can better understand the information that your doctor is working with. Feeling better on the gluten-free diet is a test in and of itself though, and it's always good to listen to your body!

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

Celiac.com Sponsor (A8-M):


judy05 Apprentice
judy05
Posted

Gabrielle,

I'm glad thet I had the Endoscopy done even though my biopsy was negative and the villi was normal. The doctor found severe esophagitis which was causing a lot of the acid reflux problem. It has to be checked every year because it can lead to Cancer. I'm glad that I had the whole tract checked, it is better to be aware of the problems instead of wondering all the time what "might" be.

I have Gluten Intolerance, not Celiac because I don't carry the"gene" for Celiac. There's supposedly a few of us who do not have the gene but yet can be diagnosed with it. I don't have damage to my villi but maybe would have developed it by staying on a gluten diet. My DR. is very good but insists that I don't have celiac. I also cannot tolerate casein/dairy.

Ask your Dr for the gene test then you will know for sure. Hope this helps... :)

KaitiUSA Enthusiast
KaitiUSA
Posted

The problem with the gene test is 2% of celiacs do not have it and 30% of people who don't have it also have the gene. It is a good bet though considering 98% of celiacs have the gene but its not a sure bet.

Archived

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

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


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.