Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Think I May Have Celiac Sensitivity, Diagnosed Diverticulosis
0

22 posts in this topic

I am new to this site and decided to join because you all are so helpful to each other. Let me tell my story, since 2007 I have been dealing with intestinal issues and allergies. I have Kaiser and I would go in complaining about swelling after I eat, heaches, join pain, nausea, vomitting, chronic fatigue, depression, being cold all the time, unable to concentrate and hives. I was told several times that I have constipation and to take fiber and should be ok. For my depression I was given Prozac and have been taking ever since. I was told to go to bed earlier should help with the fatigue, but no matter how much I sleep I am still tired all day every day. They have always made me feel like I was going crazy or like I was a hypochondriac. I would do everything they tell me but my symptoms would not leave and in fact they have gotten worse as the years past. Some days the bloating is so bad that all I can do is cry from the pain an pressure. All of these symptoms would show up between 5-10 mins after eating.

My PCP ran thyroid test, full blood work up and the only thing that came back low was always Vit D and Vit B12. So they would keep telling me that I am fine.

In 2009 I started having server hive all over my body after eating, I had allergy test done and found out that I am allergic to: Chicken, shirmp, salmon, garlic, sweet potato, green beans and mushrooms. So I have removed all of those from my diet and still have the above symptoms without any relief.

In March 2012 I had my PCP order blood work for Celiac she ordered Transglutaminase IGA and Gliadin IGA and they came back NEGATIVE. So I requested to have an appointment with a GI since I started seeing blood in my stool. So the GI did an Upper Endoscopy and Colonoscopy on November 21 and found that I have Diverticulosis of the Colon and Internal hemorrhoids. I am nervous about the results because for so long my doctors would tell me that there was nothing wrong. Everything I looked up about diverticulosis did not have the symptoms that I have. I think I may be Celiac Sensitive but scared to see what my results come back with. Any advice.

0

Share this post


Link to post
Share on other sites


Ads by Google:

I want to give the full list of my symptoms:

Depression

Stomach grumbling (after I eat or drink)

Joint Pain in shoulder and akle

Anxiety

Weight gain

Bloating

Constipation/Loose Stool

Nausea

Blood in Stool

Flatulence

Itchy Skin

Vitamin Deficiency

Fatigue

Arms and fett goes numb

Inability to concentrate

Oily Stool (most time)

Some morning wake up feeling like I have a hangover but Have not had anything to drink

Acne

0

Share this post


Link to post
Share on other sites

Hi,

You do have symptoms that match celiac disease. Once you get your test results, either positive or negative, you can try the gluten-free diet. If your symptoms improve over 3 months or so then you know there is some kind of issue with gluten and your bodie's reaction. Symptom improvement is the goal anyway, as diagnosis is nice but not critical. Treatment is the same regardless, a gluten-free diet. for life. Welcome to the forum and I hope yuou find answers that hellp you.

1

Share this post


Link to post
Share on other sites

Thanks for your repsonse GFinDC, I was thinking about going gluten free now and for life. Wasn't sure if I need to wait and maybe have my doctor do the full celiac panel since she only order the Transglutaminase IGA and Gliadin IGA and they came back NEGATIVE.

0

Share this post


Link to post
Share on other sites

I agree you should remove gluten as soon as testing is complete.

I do think it would be wise to have your doctor order:

Total Serum IgA

tTG IgG

AGA IgG

DGP IgA and IgG

before you remove gluten.

Welcome to the Forum - Hope you are able to remove gluten soon as your symptoms are consistent with Celiac Disease.

Good Luck to you :)

0

Share this post


Link to post
Share on other sites




Well, you didn't get the full panel of tests, so you really can't rule out Celiac Disease. You may be IgA deficient (did they test total IgA?). My son is NOT IgA deficient but all his IgA tests were negative too. He had a positive on the IgG tests and a positive biopsy. When your doctor did the endoscopy, did he/she take samples for a biopsy? Even then, it can still be missed.

You can start the diet without positive test results. Many people who are sensitive still test negative. If you want to try again with more blood tests, don't start the diet. Whenever you decide you are done with testing, try the diet. Be strict and try it for 3 months. If you are feeling better, you will have your answer. Think of the diet as the final test.

Your symptoms certainly sound like gluten intolerance or celiac disease.

0

Share this post


Link to post
Share on other sites

Thanks for the reponses.

@GottaSki, just sent my doctor a message to see if he can put in order for me to go get the Full Panel done and also the nurient testing.

@Cara in Boston, I will start my new gluten free life once the doctor tell me if he will put the order in for me. I was just looking at my health records and I have been back a forth with my symptoms since 2006, not 2007. But I am just hoping to be done with it all, so I can start living again. It is some much to learn.

Thanks Guys

Latrice

0

Share this post


Link to post
Share on other sites

My GI will not order more blood work for me, this is his response.

You recently underwent an upper endoscopy with biopsies, which is definitive for the presence of celiac disease. You do not need additional blood work for celiac testing. Please be patient while your biopsies are being examined. Your results will be provided to you as soon as they become available. In the meantime, you may stop by the lab to have your Vit.D and B12 levels checked as requested.

Latrice

0

Share this post


Link to post
Share on other sites

Jeez - makes me sad to hear of yet another dismissive doctor - running a full celiac panel in patients that present with celiac symptoms will become common place one day.

Until then - there are three paths to choose from:

Wait for the biopsy results - if possitive re-request proper celiac testing.

Remove gluten now. Remove it ALL for no less than three months (six is better) - of course if your biopsies come back positive you have the answer - remove gluten for life.

Find a doctor that specializes in Celiac Disease and have them review your case/order the remaing blood work.

Oh a 4th option would be to pay privately to have a complete panel. USA Health Checks (I think that's their name) has a full celiac panel without AGA for $200.

Hang in there :)

1

Share this post


Link to post
Share on other sites

@GottaSki- I started a fast yesterday to cleanse my systems and give my digestive system chance to rest. After my fast I will be start my new gluten free life. Thanks so much for the advice, I know this wont be easy but I will stick in there.

0

Share this post


Link to post
Share on other sites

Sounds good Latrice. We are here to give advice and lend an ear to wail in if needed. :) Congrats on your decision to go gluten-free and I hope it resolves your health issues soon.

0

Share this post


Link to post
Share on other sites

Well just got my biopsy results back and they were negative for Celiac. This is so frustrating, I am so confused. I have been fasting for the last two days and have been feelings so good. The swelling in my stomach has gone down, the anxiety is better and haven't felt depressed. After my fast I am going to still go gluten free, maybe I have a gluten intolerance.

0

Share this post


Link to post
Share on other sites

Well just got my biopsy results back and they were negative for Celiac. This is so frustrating, I am so confused. I have been fasting for the last two days and have been feelings so good. The swelling in my stomach has gone down, the anxiety is better and haven't felt depressed. After my fast I am going to still go gluten free, maybe I have a gluten intolerance.

I know how frustrating this is. My kids all test negative and I was barely positive with total villi atrophy.

I think it is a very good decision to remove gluten - but I do worry that you have not had a Total IgA and Deamidated Gliadin Peptide IgA or IgG.

If you improve when you remove gluten you may have lingering questions and it is often difficult to conduct a gluten challenge - even if you do the challenge - there is no guarantee you will test positive -- the data you have in your blood now before removing gluten will be lost.

If you don't improve right away, you may believe that gluten is not the problem - there were months when I was not improving that I doubted my diagnosis because I just wasn't improving as doctors told me I would once I removed all gluten.

Ok...I've told you a few scenarios on the bummer side of what may happen in the coming months -- I don't have a crystal ball -- you could be one of the folks that improves gluten-free and never looks back. I do hope this is the case for you.

Hang in there :)

PS...make sure you get a written copy of the endoscopy report AND the pathology report - there is often important details in these reports that can be a helpful part of the whole picture.

Edited by GottaSki
0

Share this post


Link to post
Share on other sites

Hi Latrice,

You could have one of these 2 newly identified conditions that react to wheat. The symptoms can be similar to celiac disease.

Non-celiac wheat sensitivity article

http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

0

Share this post


Link to post
Share on other sites

Thank you all so much for the support and information. I did get my Vit D and B12 results back and I am deficient in Vit D, but my B12 was good. I have an appointment with the Allergist today, because I have several food allergies that did not exist until 2009 I want to have blood drawn for all food and I will see in he will order the full celiac panel. But I do have a question, "I have been fasting for the last 4 days, not eating anything, will that affect the test?"

0

Share this post


Link to post
Share on other sites

Thank you all so much for the support and information. I did get my Vit D and B12 results back and I am deficient in Vit D, but my B12 was good. I have an appointment with the Allergist today, because I have several food allergies that did not exist until 2009 I want to have blood drawn for all food and I will see in he will order the full celiac panel. But I do have a question, "I have been fasting for the last 4 days, not eating anything, will that affect the test?"

The test may be affected Latrice. It depends on how fast your antibodies decline after the gluten removal. Some people they go down quickly, for others they stay elevated for months.

0

Share this post


Link to post
Share on other sites

Don't know about the allergy question but wanted to share that my biopsy was negative and it is very clear and obvious that I have celiac. After my son was diagnosed, I had my blood tested and it was positive. I also had all the classic symptoms, but just didn't know about Celiac to be tested before. I went gluten-free with my son and it was like a miracle. My son's doctor just laughed at the fact that my MD said I "couldn't possibly" have celiac because the biopsy was normal. She said, "of course you have it."

Trust your gut (no pun intended) and try the diet.

Cara

0

Share this post


Link to post
Share on other sites

Thank you guys so much. I haven't had gluten in 4-5 days now and I feel great. My new life has begun and now I will be able to live. I am happy to have found a supportive community like this.

0

Share this post


Link to post
Share on other sites

Thank you guys so much. I haven't had gluten in 4-5 days now and I feel great. My new life has begun and now I will be able to live. I am happy to have found a supportive community like this.

Cool, feeling better is great! :) I suggest you stick with whole foods mostly and limit the gluten-free processed foods. You can always add those things in later after you have healed up some.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non-celiac wheat sensitivity article

http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

Super Easy Meal Ideas Anyone?

0

Share this post


Link to post
Share on other sites

Thanks so much GFinDC. This will be really helpful. :-) This is the best place ever, so glad to be here.

0

Share this post


Link to post
Share on other sites

Thanks so much GFinDC. This will be really helpful. :-) This is the best place ever, so glad to be here.

You are quite welcome ICN1010! There really is great bunch of info here and lots of support. It's nice to know we aren't alone in these problems when they happen. It's also nice to know people can get better and improve by adjusting their diet. It may take some time for the things to get better part, but it can happen. :)

Corrected some typoes.

Edited by GFinDC
0

Share this post


Link to post
Share on other sites

You are quite welcome ICN1010! There really is great bunch of info here and lots of support. It's nice to know we aren't alone in these problems when they happen. It's also nice to know people can get better and improve by adjusting their diet. It may take some time for teh get better part, but it can happen. :)

Absolutely...we all have different symptoms, presentation to docs, testing results, healing speeds and so many more differences -- the wonderful thing is we have the frustration in common -- this allows us to bounce ideas off each other -- this forum and many compassionate members like GFinDC have made an important difference for me more times than I can count.

I'm still learning each day -- I do hope you find answers quickly -- if not hang in there and keep asking questions :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,647
    • Total Posts
      918,464
  • Topics

  • Posts

    • Biopsy confirmed?
      Right, usually they do an endoscopy after a positive blood antibody test.  The biopsy confirms the antibody results.  Doing them in the reverse order doesn't hurt anything though.  Sometimes people "fail" the antibody tests but still have gut damage.  Not everybody makes the same antibodies or in the same quantities.  Anyway, you should make sure they are doing the complete celiac antibody panel, not just a ttg test. And don't worry if the celiac tests are positive for gliaden antibodies.  Going gluten-free is an adjustment to your diet. Quite a few people around here have managed to adjust successfully.  It takes some effort, but anything worthwhile does they say.
    • Celiac Night Vision
      I don't have scotomas but you might find more help on a forum dedicated to vision issues.  Here are a couple I found.  the last link is a Yahoo search for "eye forum"  There may be others found if you try a search on Google. http://www.medhelp.org/forums/Eye-Care/show/90 http://www.healthboards.com/boards/eye-vision/ https://search.yahoo.com/yhs/search?p=eye+forum&ei=UTF-8&hspart=mozilla&hsimp=yhs-003
    • Positive Biopsy, Negative Blood Tests
      BTW, all first degree relatives of celiacs are supposed to be tested for celiac every 2 years in the absence of symptoms -- immediately if symptoms present. Your kids, your parents & all siblings should be tested. And that goes for your brothers kids too.
    • Positive Biopsy, Negative Blood Tests
      I agree completely with cyclinglady! Do you even know that there is such a thing called silent celiac? No symptoms at all but the villi are damaged.  I see you joined in 2009. Why? Is that when your brother was diagnosed? IMHO you need to do a lot of research & find out just exactly what you're risking. 
    • Positive Biopsy, Negative Blood Tests
      What?  Be sure that next endoscopy tests you for lymphoma (cancer) as well!   Seriously.  You need to do some research as your knowledge of celiac disease is lacking.  Did you fail the entire celiac panel?  Or did your doctor/insurance save cash and just order the very good (but does not catch all celiacs) TTG IgA?  You have a family history, a positive biopsy, what more do you need?  You do realize that this is not about just giving up gluten, don't you?  We just had a member join this year who was told years ago that her tests were "inconclusive" and that she now has suffered with lymphoma (cancer)? Ugh!   Endoscopy in 10 years?  Who would even wait 10 years?  This isn't colon cancer and polyps!   Are you talking about a colonoscopy?  Are you even sure you had an endoscopy?   Be sure you have your bones checked too.....and forget the breath.  You might not have any teeth and implants will be out since your bones will be compromised. Sorry, if I come on strong, but when I was diagnosed I had no tummy issues.  A few months later, my bones began breaking.  I was undiagnosed for a long time because of mis-informed doctors.  At least it was not stupidity on my part.   So, I urge you to research this disease more!  Hopefully you'll ward on another autoimmune disorder by remaining gluten free.  Find what celiac blood tests were actually taken!  Even if you do not think you have celiac disease, something has caused villi damage -- like a parasite, milk, or something......even more sinister! Good luck!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,741
    • Most Online
      1,763

    Newest Member
    Roemill
    Joined