Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Rate this topic

Recommended Posts

I tested negative to Celiac with blood testing and biopsy. Will having the food allergy testing help me to know for sure if I am gluten intollerant? Are there questions I should be asking? I called to schedule an appointment and it was like a test. They couldn't understand why I wanted to come. I told them all of my symptoms, history and she still said, what are you allergic to." I thought that was what the appointment is for. I told her some of the foods that bother me and I still felt lost from her. I am trying to help myself with scheduling an appointment........should I not do this? Thank you. My appointment is for next Friday.

Share this post


Link to post
Share on other sites
I tested negative to Celiac with blood testing and biopsy. Will having the food allergy testing help me to know for sure if I am gluten intollerant?

No, but if you are allergic to wheat that would come up. But you may not be, and allergy tests cannot identify autoimmune disorders. The only way to know if gluten is the culprit, if your tests came back negative, is success on a gluten-free diet.

Good luck!

Share this post


Link to post
Share on other sites

good luck with the allergy tests!! I have not been diagnosed as Celiac either and when I did the allergy tests, none of the foods that suddenly was a huge problem for me showed up on them! A few that I didn't seem to have a problem with at all did, but not the ones that did. Go figure! My docs couldn't explain anything except perhaps a shift in my hormones. I think that's their explaination for alot of things when a 50 yr old woman shows up. I simply don't eat the things that bother me! And that works. I have learned that alot of times if you are a young child with food allergies and you grow out of them, alot of times those foods revisit you as allergies later in your adulthood. And some of those foods ARE revisiting. I would much rather have a definitive answer by tests though!!

Share this post


Link to post
Share on other sites

If blood testing and biopsy were negative then you don't have celiac. You might just be allergic to wheat. You can find out if your allergic to dairy, wheat, soy, or eggs with an allergy test. Celiac is an autoimmune disorder, it won't show up on an allergy test.

Share this post


Link to post
Share on other sites

If you're negative on the blood work and biopsy, then "medically speaking" you don't have Celiacs. But, you can still try the gluten free diet. Some people just dont have an easy time getting a positive biopsy. Try the strict gluten-free diet and see if you feel better. Then in a month or two eat some gluten and wait to see what happens. If you have a gluten reaction, then live gluten-free and be better. For our family, the gluten accident happens early on in the diet and its a big noticable reaction.

As for the allergist. You can be tested for an allergy to wheat. Celiacs disease has nothing to do with an allergy to wheat. The allergist can do a skin test or a blood test looking for allergies. It is a good idea to look at your overall health before the appt. Sinus trouble, breathing trouble, headaches, rashes, itchy areas, symptoms that happen around foods or animals....lots of things can be symptoms of an allergy. (We have serious food allergies in our family. So we are used to the allergist and testing.)

Another option is to find a good herbalist to do some muscle testing or kinesiology looking for the foods that bother you. They can usually find foods or medicines that just do not work for your body. Be aware that it can take a few visits before you find an herbalist you really like. Plus insurance doesnt always cover them.

Hope you feel better.

Share this post


Link to post
Share on other sites

Niet. I have been to the allergist just today and I have no allergy to any of the food I was tested. Not wheat, not milk, egg, corn soya etc. Allergies are very different from food intolerances. The doctor I saw today explained to me that allergy testing is mostly for these reactions that immediately follow the consumption et are usually severe and life threatening.

Share this post


Link to post
Share on other sites

Thank you for all of your answers. Which leads me to.......What is the difference in being gluten intolerant and Celiac? Is there NO damage done to your organs if you are only intolerant? Besides the fact that it makes me sick and all kinds of other stuff.

Share this post


Link to post
Share on other sites
What is the difference in being gluten intolerant and Celiac? Is there NO damage done to your organs if you are only intolerant? Besides the fact that it makes me sick and all kinds of other stuff.

You'll find lots of debates about this if you look back through the archives. IMO, gluten intolerance can be (but isn't always) just as bad as biopsy-diagnosed celiac disease. What kind of symptoms have you noticed in your own case? Keep in mind that gluten intolerance can affect a lot more than just your GI system. In people with DQ5 and DQ6, for example (which are both subtypes of DQ1), the main features of gluten intolerance are often neurological... migraines, seizures, MS, neuropathy, depression, etc... People with the DQ3 subtypes (DQ7, DQ8, DQ9) tend to develop rheumatological disorders like lupus, rheumatoid arthritis, and Sjogren's syndrome. In some cases, these disorders can improve on a gluten-free diet... in spite of having "normal" villi the whole time.

Share this post


Link to post
Share on other sites
If blood testing and biopsy were negative then you don't have celiac. You might just be allergic to wheat. You can find out if your allergic to dairy, wheat, soy, or eggs with an allergy test. Celiac is an autoimmune disorder, it won't show up on an allergy test.

Negative blood and biopsy does not totally rule out celiac. You can still be celiac with one or both. In the case of blood tests although they have improved the NIH still states a fairly large percentage that have false negatives on blood testing. As for the biopsy, you have 22 ft of small intestines and the damage can be patchy or in an area that the scope cannot reach. If a damaged area is not biopsied then your results will be a false negative. Also there are stages of damage involved with celiac and some doctors are reluctant to diagnose until you get to the stage where the villi are destroyed or don't recognize the changes that appear before that happens.

Share this post


Link to post
Share on other sites

I was previously told I had a Stroke untill seeing the Neurologist. An EEG states possible seizures in Left Temporal Lobe with pain and sensitivityand migraines on that side, depression, severe neurological problems, numbness and tingling at different parts of my body but most of the time on left side, constipation and more. So I guess it's not worth going for the food testing due to meeting the same challenges as the biopsy. hmmmmmm Thank you so much......just frustrated. I am also losing my Vit. D and I've also been recenty diagnosed with IGA deficient.

Share this post


Link to post
Share on other sites
I was previously told I had a Stroke untill seeing the Neurologist. An EEG states possible seizures in Left Temporal Lobe with pain and sensitivityand migraines on that side, depression, severe neurological problems, numbness and tingling at different parts of my body but most of the time on left side, constipation and more. So I guess it's not worth going for the food testing due to meeting the same challenges as the biopsy. hmmmmmm Thank you so much......just frustrated. I am also losing my Vit. D and I've also been recenty diagnosed with IGA deficient.

If you are IGA deficient that will negate the blood tests, you will have a false negative. I hope you are going to give the diet a good chance to help. You sound a lot like myself symptom wise in the early stages and I was very difficult to diagnose. One thing that may help along with the diet is to add some sublingual B12. Make sure it is gluten free and don't be scared by the high amount in the tablets. You can not take too much of B12 as any excess will simply be excreted. You should also add some gluten free Vit D3 unless your doctor has given you a script for it.

Share this post


Link to post
Share on other sites
If you are IGA deficient that will negate the blood tests, you will have a false negative. I hope you are going to give the diet a good chance to help. You sound a lot like myself symptom wise in the early stages and I was very difficult to diagnose. One thing that may help along with the diet is to add some sublingual B12. Make sure it is gluten free and don't be scared by the high amount in the tablets. You can not take too much of B12 as any excess will simply be excreted. You should also add some gluten free Vit D3 unless your doctor has given you a script for it.

Thank you so much for the information. My doctors are done now that they say I do not have Celiac. I am sticking with the diet. I just ordered Cecelia's Marketplace gluten-free casein and soy free due to them being sold out everywhere for gluten free and dairy. Their finishing up on their 2009 2010 additions. It just makes me wonder if I should stop tryng to find out if there is something different wrong with me that I should continue to look for an answer in order to maybe help myself if it's not the gluten. Did that make sense? I will get the Vitamin B12 and I started taking Vitamin D3 about a month ago and take 3 to 4 thousand a day plus my multi plus 1500 calcium. You've been a big help and I so appreciate any guidance.

On Another note.......Has anyone heard of any of this causing someone to become a HERMIT? I do not want to leave the house and I don't unless absolutely necessary. I will go on a trip here and there but do not want to be around people. It seems to get worse each day. I use to be a people person. No worries if no one has no answers.

Share this post


Link to post
Share on other sites
Thank you so much for the information. My doctors are done now that they say I do not have Celiac. I am sticking with the diet. I just ordered Cecelia's Marketplace gluten-free casein and soy free due to them being sold out everywhere for gluten free and dairy. Their finishing up on their 2009 2010 additions. It just makes me wonder if I should stop tryng to find out if there is something different wrong with me that I should continue to look for an answer in order to maybe help myself if it's not the gluten. Did that make sense? I will get the Vitamin B12 and I started taking Vitamin D3 about a month ago and take 3 to 4 thousand a day plus my multi plus 1500 calcium. You've been a big help and I so appreciate any guidance.

On Another note.......Has anyone heard of any of this causing someone to become a HERMIT? I do not want to leave the house and I don't unless absolutely necessary. I will go on a trip here and there but do not want to be around people. It seems to get worse each day. I use to be a people person. No worries if no one has no answers.

I would give the diet a couple of months before looking for other things, give it a chance to heal you first.

I am someone who has become a hermit. I am not antisocial but the fear of a reaction (mine are very severe) combined with residual damage and PTSD from other life experiences has made me agoraphobic. I gave in to it for 7 years but finally realized I needed help when I found myself restricted even in my own home. My depression is gone but my anxiety is through the roof. I let it spiral till the restrictions became severe but am now in therapy with a psychologist and see a psychiatrist for my medication. For me alprazolam, the generic form of Xanax (name brand is NOT gluten free) is helping quite a bit. I am able to walk my little dog once in a while now and went to my first movie in 7 years a couple weeks ago. Do not be afraid to get some help with those issues if they continue once you have recovered your health. I would hate to see anyone else living the half life that I do.

Share this post


Link to post
Share on other sites
I would give the diet a couple of months before looking for other things, give it a chance to heal you first.

I am someone who has become a hermit. I am not antisocial but the fear of a reaction (mine are very severe) combined with residual damage and PTSD from other life experiences has made me agoraphobic. I gave in to it for 7 years but finally realized I needed help when I found myself restricted even in my own home. My depression is gone but my anxiety is through the roof. I let it spiral till the restrictions became severe but am now in therapy with a psychologist and see a psychiatrist for my medication. For me alprazolam, the generic form of Xanax (name brand is NOT gluten free) is helping quite a bit. I am able to walk my little dog once in a while now and went to my first movie in 7 years a couple weeks ago. Do not be afraid to get some help with those issues if they continue once you have recovered your health. I would hate to see anyone else living the half life that I do.

You're so sweet......helping others when you are hurting too. I wish you all better. I am taking meds for the depression but still don't want to go out. It will be okay though. I will stick to the gluten-free diet and see how much better I get and go from there. Congrats on the Movie. I'm so glad you were able to go. I will give all of this time to work and heal me and then think about it. Thank you so very much.

Share this post


Link to post
Share on other sites
You're so sweet......helping others when you are hurting too. I wish you all better. I am taking meds for the depression but still don't want to go out. It will be okay though. I will stick to the gluten-free diet and see how much better I get and go from there. Congrats on the Movie. I'm so glad you were able to go. I will give all of this time to work and heal me and then think about it. Thank you so very much.

You might also consider avoiding dairy for a bit at the same time, or at least limiting it. It may help you to heal a bit faster. I got a great deal of relief from the tingling and some other neuro symptoms pretty quickly with the B12 an the diet. Unfortunately my neuro damage started in childhood when I developed ataxia and that is still a bit of a problem but most noticeable when I get glutened. Do be sure to make absolutely sure that the depression med they are giving you is gluten-free, the pharmacist would be the one to ask or you can ask the company that makes them directly.

I am glad to hear you have a positive attitude about all you are going through that can help a great deal in the coping department. Little steps are best to take when you are fighting the tendency to be a hermit. Once you are feeling better they will be easier to do.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
Hello Cyclinglady,  My ferritin is at 28 and hemoglobin normal. Honestly 28 is super high for me, but maybe I feel the symptoms more, I used to live on adrenaline (former workaholic). I have no thyroid issues, but am on my 2nd year of menopause. Getting a urine test, a blood test and a blood smear tomorrow. I live in Switzerland, but it is spring here too. Cats, pollen, birch trees, perfumes, detergents etc trigger me. oh and apples, celery, soy etc. At this point, I feel lik
  • Blog Entries

  • ×
    ×
    • Create New...