Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Confusing News

Derek Borckmann

Recommended Posts

Derek Borckmann Newbie
Derek Borckmann
Posted

After three months of being on a gluten free diet I called my doctor and told him I was felling worse. He ran some blood tests and called back indicating that me having Celiac Disease was not likely as all the allergy tests that were run came up negative. Other tests that indicated Celiac as well as some other organ testing that he said would indicate Celiac was not present. He indicated that part of the biopsy indicated that I did not have the jean that causes this and the limited stunting of the hairs I have was caused by something else.

Three months ago he indicated that I likely had Celiac and needed to go gluten free and now this.

Have others encountered this as some of the stories I have read have been similar.

I am going to remain gluten free to see if the symptoms change but wanted some opinions.

Derek

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

Celiac.com Sponsor (A8-M):


mftnchn Explorer
mftnchn
Posted

Hi Derek. After three months gluten-free your blood tests would not show celiac, so I am puzzled your doctor did that and then said you did not have it. It sounds to me like you have a doctor that isn't all that informed about celiac.

About getting worse, there are several people here who have talked about that. Hopefully others will respond.

I am gluten-free not quite as long as you so can't give you a longer term perspective. But I have been worse overall rather than better since going gluten-free. I am still trying to figure this out too. It is obvious to me that going Gluten-free Casein-free has triggered a major upheaval in my body. So I think if I was not gluten sensitive/celiac, that would not have happened.

My thoughts are possibly other food sensitivities, lyme disease, retracing of symptoms, vitamin mineral/and or malnourishment symptoms. Or exposure to gluten in some form that you don't realize such as cc or a change in ingredients of something that used to be safe. Celiac is also associated with other auto-immune disease--so something not yet tested for or for which your symptoms are atypical?

elye Community Regular
elye
Posted

One thing I can say for sure is that it takes many people who ARE gluten intolerant a few months, perhaps even a year, before they feel significantly better on the gluten-free diet. :( This is something I've read over and over here in this forum. So even though you have not yet physically responded to the gluten-free diet, you may still have an intolerance. So often a person quits this challenging diet after not giving it enough time. "I still feel miserable, and I've been doing this all summer! It can't be gluten!" A common lament from an understandably frustrated person who yet still may be gluten intolerant.

elye Community Regular
elye
Posted

One thing I can say for sure is that it takes many people who ARE gluten intolerant a few months, perhaps even a year, before they feel significantly better on the gluten-free diet. :( This is something I've read over and over here in this forum. So even though you have not yet physically responded to the gluten-free diet, you may still have an intolerance. So often a person quits this challenging diet after not giving it enough time. "I still feel miserable, and I've been doing this all summer! It can't be gluten!" A common lament from an understandably frustrated person who yet still may be gluten intolerant.

Rosewynde Rookie
Rosewynde
Posted

Sounds like an uninformed doctor to me. On a gluten free diet your stomach can heal within that time period and show up normal.

I'd also check other possible sources of gluten, changes in your diet, new meds, something that was safe that isn't any longer, or cross contamination. Also possible that something your having more of now on the gluten free diet is a problem. Someone on here was saying they found out they couldn't handle corn and that is in nearly everything that is gluten free.

Guest Doll
Guest Doll
Posted
After three months of being on a gluten free diet I called my doctor and told him I was felling worse. He ran some blood tests and called back indicating that me having Celiac Disease was not likely as all the allergy tests that were run came up negative. Other tests that indicated Celiac as well as some other organ testing that he said would indicate Celiac was not present. He indicated that part of the biopsy indicated that I did not have the jean that causes this and the limited stunting of the hairs I have was caused by something else.

Three months ago he indicated that I likely had Celiac and needed to go gluten free and now this.

Have others encountered this as some of the stories I have read have been similar.

I am going to remain gluten free to see if the symptoms change but wanted some opinions.

Derek

In addition to what has been said, it is fine to stay on the diet, but make sure you follow up with your doctor in case it ISN'T Celiac. I assume he tested your liver and kidney function in addition to basic bloodwork? Can you tell me what your symptoms are?

gfpaperdoll Rookie
gfpaperdoll
Posted

I have double DQ1 genes. That is commonly referred to as Gluten Intolerance. Gluten Intolerance is as bad or worse than "Celiac". Gluten Intolerance also comes with neurological issues etc.

When you are tested for the genes at your doctors office they only test for DQ2 & DQ8. You can also have total villi atrophy & not have these two genes. 1% of the biobsy dx'd people do not have DQ2 or DQ8. They do know there is at least one celiac gene that is not known, in addition to the DQ1 & DQ3 gluten intolerance genes & maybe DQ7 - I am not sure on that one.

IMO the blood tests are almost useless. I would suggest testing thru Enterolab.

Now as to why you might be feeling worse.

These are all guesses put out here for your consideration.

1.

Your gut absorption might be getting better & triggering a reaction to any of the following, OR you might be feeling better from the no gluten but now any other food issues you had before are becoming noticeable OR you have just developed a new (temporary?) food intolerance.

Dairy

Soy

Corn

Eggs

Nighshade Family - peppers, tomatoes, potatoes, eggplant, etc etc

Yeast

Artificial Sweetner

Coffee

Tea

Sodas

2. You are eating bought gluten-free bread, cookies, crackers etc. ALL that stuff has some level of cross contamination in the grains. There are a couple of the celiac doctors that advise that all gluten-free grains are cross contaminated. Which I also believe. I just cannot handle any of it. It is my opinion that you can eat a great delicious diet without those products. I do. I eat Lundberg Rice Chips, Mission Brand White Corn Tortillas as special treats - not every day. I eat my spaghetti sauce etc over Rice.

3. If your house is not gluten-free you are getting cross contamination there. After a time gluten-free you become more sensitive to it. So if someone in your house is eating wheaty sandwiches or cooking with flour (airborne gluten equals a given you are going to have symptoms). Did you replace your cutting boards, plastic spatulas, wooden spoons, colanders, non stick pans, clean out the kitchen - really well?

I suggest you pare back to some basic whole foods & go from there. I also highly recommend the book "Eat Right for Your Blood Type", & Dangerous Grains.

You could also check into the SCD (Specific Carbohydrate Diet) books & articles.

Are you taking a B12 everyday?

Are you getting enough good carbs? protein? You could do a check of all the vitamins & minerals etc. that you are getting in your diet.

Are you exercising? That really boosts your immune system - I think especially for us...

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
      131,216
    • Most Online (within 30 mins)
      7,748
    billiam3some
    Newest Member
    billiam3some
    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

    • Scott Adams
      My mo,ther married a bread making when I was 4

      By Scott Adams · Posted

      Your story is a powerful and heartbreaking testament to the profound damage that can be caused by undiagnosed celiac disease and the profound pain of not being believed or supported by family. It is sadly a common narrative within the celiac community to have suffered for years, even decades, while autoimmune conditions stack up, all while being dismissed. To answer your core question: yes, living in a environment with significant, constant gluten exposure, especially from airborne flour in a home where milling and baking occurred, would have created a perpetual state of autoimmune activation for you, even beyond the direct ingestion. This chronic exposure is strongly linked to the development and exacerbation of the very autoimmune disorders you describe—Migraines, Meniere's, Hashimoto's, and more. Your body was under constant attack, and the lack of care and understanding from your family compound that trauma significantly. It is not your fault. Many in the community share similar stories of a cascade of illnesses finally explained by a celiac diagnosis, often coming too late to prevent irreversible damage. While I cannot speak to the legal aspects of your inheritance situation, your experience with the medical neglect and the lasting impact of your childhood environment is deeply valid and shared by others who understand this unique type of suffering. Thank you for having the courage to share your truth. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      7yo struggling!

      By Scott Adams · Posted

      It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out" to "empowered choice." Instead of "you can't have that," use language like "we choose these safe foods so your tummy feels happy and strong." Involve her directly in her own care; let her be the "Gluten-Free Detective" at the grocery store, picking out exciting new treats, or make her the head chef in baking a special dessert that everyone gets to enjoy. When eating out, empower her by having her call the restaurant ahead to ask about safe options (with your help), making her feel in control rather than a passive victim. Acknowledge her feelings—"It's okay to feel sad that you can't have the roll, I sometimes feel that way too"—and then immediately pivot to a positive action, like unwrapping the special brownie you brought just for her. This combination of validation, involvement, and reframing turns a limitation into a shared family challenge where she feels supported, capable, and loved.
    • Scott Adams
      Rice Flakes

      By Scott Adams · Posted

      I know that Shiloh Farms makes this product, but I don't think it is labeled gluten-free.
    • Scott Adams
      Food Allergies

      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:    
    • Scott Adams
      Diagnosis and further testing Celiac

      By Scott Adams · Posted

      It's strange to see two very different results in what appears to be a single blood test--one is positive and one is negative for a celiac disease test. Are these results separated by time? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...