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

Tests For Celiac

jenny2

Recommended Posts

jenny2 Rookie
jenny2
Posted

hello. i am having alot of problems with weight loss, diarrhea, and the list goes on and on. my doc gave me the celiac genetic test ( unsure of name) and it came back positive. he has since ordered a colonscopy which was normal and a small bowell follow up for next week. will the small bowell follow up show the damage in the small intestine? in 2004 i had a postive endoscopy with flat villi of the small intestine but all blood work was negative and they told me that i didnt have celiac because of the blood. now i am having problems again and just want to find out if i have celiac disease once and for all. thanks for the help..

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

If you had flattened villi chances are really high you have celiac and your blood tests were a false negative. Have they run the blood tests again? You could be positive by now if you continued to eat gluten. What you need is another endo to see if your villi are still flattened as the other tests wouldn't show the damage.

After all your celiac related testing is done it would be a very good idea to get started on the diet strictly.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

My blood work came back negatice for Celiac, but the endoscope showed flattened villi. The GI specialist said it was Celiac Sprue.

There's about 30% of us that have normal blood work but have Celiac disease. I'm surprised you didn't get a DX in 2004 with your first endoscope! :o

I really wish Dr.s would learn more about the disease so they can DX sooner, saving people from additional damage to their bodies.

Good luck to you!

jenny2 Rookie
jenny2
Posted
  • Author

my doctor wants to run a small bowell follow thru. how do i get him to run a endoscopy? should i call them and ask them why they are not running a endo on me? I will not see the doctor again for awhile, he is going to wait till the results from the biopsy of the colonscopy and the small bowell come in.

ravenwoodglass Mentor
ravenwoodglass
Posted

my doctor wants to run a small bowell follow thru. how do i get him to run a endoscopy? should i call them and ask them why they are not running a endo on me? I will not see the doctor again for awhile, he is going to wait till the results from the biopsy of the colonscopy and the small bowell come in.

Whether you choose to do more testing or not is entirely up to you and with your past positive endo and recovery on the diet some doctors would give you the 'official' diagnosis if you need one any reason. If you do need to have more testing you might request that they run a full celiac panel on you first thing. Just because you were negative before doesn't mean you are now and make sure they test your total IGA and that they do the newest test the DGP in addition to the others. Then you could wait on those results before you do more testing. If it is positive then your doctor will likely agree to redo an endo and I would tell them I wanted that done first or just skip it and get on the diet. You also have the option of getting the full records from the last endo with the flattened villi and get a second opinion. You may find the second opinion guy considers you diagnosed.

No matter what happens with the doctors when all your celiac related testing is done do give the diet a good strict try.

jenny2 Rookie
jenny2
Posted
  • Author

i am going to get my medical records from 2004 today when the doc that did the endoscope told me that i had flat villi and looked like celiac disease. i am going to send them to my new gastro with the hope that he will do another endoscope on me. i understand why he did the colonscopy and has ordered a small bowell follow thru but at the same time i would like to have the endoscope done again because from what i am reading they say that is the gold standard of diagnosis? i need to get this straighten out once and for all, i know that there is something wrong with me because of the extreme weight loss of 25 pounds in 1 and half months. in 2004 when they found celiac with the endoscope i had lost 30 pounds in 2 months.

Archived

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

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


  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.