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

Dna Test Positive, Biopsy Negative

confused mom

Recommended Posts

confused mom Rookie
confused mom
Posted

My daughter tested positive for Celiac with a blood test, but her endoscopy biopsy was negative. The doctor said that she has "Latent Celiac" and that her severe stomach aches were not at all caused by Latent Celiac, but by IBS (irritable bowel syndrome). We had a DNA test done for her and it came back positive for the DQ2 gene, meaning she is highly likely to have Celiac at some point. If the Celiac is latent and hasn't "happened" yet, does she really need to be gluten-free for the rest of her life? I asked the doctor that question and he said that the jury is still out on that. No one knows if/when she will actually have full-fledged Celiac, so he wants her to be gluten-free just in case. I hate to have her deal with this life-changing diet if she does not need to. Has anyone else experience "Latent Celiac" and, if so, did you decide to go gluten-free? I'm having a hard time accepting this since the doctor said that her stomach aches weren't even caused by gluten. So why are we going gluten-free if it's not going to help her stomach? (She has been very constipated, so treatment for that has improved her stomach aches).

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

If she had positive blood work she has celiac and the diet will relieve her symptoms. How many biopsies did the doctor take? What were the results of those biopsies? Some doctors won't diagnose until the villi are totally destroyed. In addition damage can be patchy and get missed. Going gluten free is what she needs to do and you are in the right place for info and support with that. Also everyone in your family should get the blood tests, not all celiac presents with GI problems and it is associated with many other issues also from mood issues to arthritis to skin problems and much more. Ask any questions you need to and I hope she is feeling better soon.

confused mom Rookie
confused mom
Posted
  • Author

If she had positive blood work she has celiac and the diet will relieve her symptoms. How many biopsies did the doctor take? What were the results of those biopsies? Some doctors won't diagnose until the villi are totally destroyed. In addition damage can be patchy and get missed. Going gluten free is what she needs to do and you are in the right place for info and support with that. Also everyone in your family should get the blood tests, not all celiac presents with GI problems and it is associated with many other issues also from mood issues to arthritis to skin problems and much more. Ask any questions you need to and I hope she is feeling better soon.

Her biopsy report states:"duodenal mucosa with mildly increased intraepithelial lymphocytes. Villous architecture is unremarkable. Plasma cells are present but there is no increase in lamina propria inflammation and no foamy macrophages. The findings can be seen in symptomatic, latent, or partially treated gluten sensitivity (celiac sprue)."

ravenwoodglass Mentor
ravenwoodglass
Posted

The findings can be seen in symptomatic, latent, or partially treated gluten sensitivity (celiac sprue)."

I think your doctor may have put her in the 'latent' catagory because she has C and not D. She is symptomatic but unfortunately her doctor wants to label her with IBS. At least he did tell you she needs to be gluten free for life and that is what you need to concentrate on. Some doctors might have said to keep her on gluten and come back in a year to see if the villi are destroyed yet but that could do a lot of damage to other organs, some that would take years to repair if at all. I know that her needing to be gluten free is not likely to be what you want to hear but that is what needs to be done.

Darn210 Enthusiast
Darn210
Posted

I'm not a doctor . . .

Positive blood test = Celiac disease in my book. Furthermore, I would bet those stomach aches are from Celiac Disease. IBS is a catch-all for generic gastro stuff going on but the doc is not sure why. Being positive for the gene does not mean that you will develop Celiac Disease. About a third of the population has the gene but only about 1% develop the disease. (I believe Dr Green says that in his book "A Hidden Epidemic")

She needs to go gluten free.

By the way . . . I was in the same boat as you. Positive blood test, negative biopsy. However, I had asked for a lactose intolerance test and that showed not only was the lactase enzyme low, but all the other enzymes that are produced in the tips of the villi were low as well. My doc diagnosed celiac based on the positive blood test. I was going to prove him wrong by following the diet to a Tee and showing him that her symptoms (regurgitation and constipation) didn't go away (yep, I was in major denial). . . ummmm, well the symptoms DID go away. Then as luck would happen, she had something with wheat in it (not just cc, but actually listed as an ingredient) and had an immediate reaction. We never looked back. Try the diet.

confused mom Rookie
confused mom
Posted
  • Author

I have another question - her symptoms came on suddenly this past November. She never had stomach aches (except for the occasional constipation) prior to that. I've heard so many people say that their symptoms lasted for years before a diagnosis. I think that's why I'm in denial since this happened so suddenly. Is that strange??

ravenwoodglass Mentor
ravenwoodglass
Posted

I have another question - her symptoms came on suddenly this past November. She never had stomach aches (except for the occasional constipation) prior to that. I've heard so many people say that their symptoms lasted for years before a diagnosis. I think that's why I'm in denial since this happened so suddenly. Is that strange??

No it's not strange. The reason why so many of us have symptoms that lasted for years is because most of us were misdiagnosed for years. For me it was over 40 years although I had celiac symptoms since childhood. Doctors are finally starting to test for celiac and starting to realize that false negatives are common with testing but not false positives. For some celiac has a definate trigger that we can identify, for women it is sometimes childbirth, for some it is an illness like a severe flu or mono for example, an injury or surgery or it can be stress that triggers it and some can't pinpoint the trigger. The occasional constipation may even have been a symptom for her as some of us have C for a while before we start having D.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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.