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

Non-Specific White Matter On Mri? Anyone Else Have This?

Cara in Boston

Recommended Posts

GFinDC Veteran
GFinDC
Posted

Here is an article that might help him out on the non-symptoms part:

Latent Celiac Disease Afflicts Many Who Tolerate Gluten

Celiac.com 11/08/2007 - A team of doctors led by Christophe Cellier from the Hopital European Georges Pompidou in Paris examined a group people who were diagnosed with celiac disease as children and who tolerated the introduction of gluten into their diets, and continued to consume gluten into their adult years.

A total of 61 patients were evaluated with a bowel biopsy. 13 of the subjects exhibited no indications of the disease, a condition known as latent celiac disease. 48 of the patients without symptoms showed celiac-related intestinal damage, a condition known as silent celiac disease.

The study team observed that a similar ratio of patients with both latent celiac and silent celiac disease exhibited minor symptoms of celiac disease. Both patients with symptoms and those without symptoms had similar indications of malabsorption and similar body mass indices.

............

So it is very possible to have celiac with little or no GI symptoms. Celiac can affect may parts of the body, and not just the intestines. The brain is one pretty important body part it can affect, as evidenced by gluten ataxia. There is no reason to think gluten ataxia is the only possible impact on the brain though. Many people on the forum report ""Brain Fog" as a symptom, and anger, depression and anxiety, are not unusual either. And then there are the gluten withdrawal symptoms that people report.

Brother would do well to get all his vitamin and mineral levels checked since those are often off with intestinal damage and malabsorption.

And he should listen to his sister too. I went to doctors myself and was told there was nothing wrong with me to explain my pain, except that my HDL-LDL cholesterol ratio was extremely good. Probably because I wasn't absorbing any fats! My sister researched my symptoms and handed me a stack of articles about celiac disease. The doctors were wrong, she was right. Sisters can be ok sometimes! :)

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

My sister researched my symptoms and handed me a stack of articles about celiac disease. The doctors were wrong, she was right. Sisters can be ok sometimes! :)

I wish MY sister with her diabetes, hypothyroidism, high BP, etc. would listen to this little sister who loves her deeply and knows she is a celiac, too. :(

sigh....

pricklypear1971 Community Regular
pricklypear1971
Posted

my conversation 10 minutes ago with my Dad, overctge phone.

******

Dad: "Welll, your mom got an X-ray and she has pneumonia. They gave her an antibiotic shot".

Me: "I'm glad you have a bathroom in the RV".

Dad "Oh, that already hit with the first pill they have her".

Me: "oh".

Dad: "You get that too? You didn't get THAT from me. I don't do that".

Me: "No, but you gave me that damn rash (DH)".

Dad: "Probably".

Me: "I can tell you how to fix that (rash), but you probably won't like it".

Dad: "You're right".

cmdoppler Newbie
cmdoppler
Posted

My bio dad had those symptoms and his diagnosis was wagners granulamatosis. (autoimmune disorder)

GFinDC Veteran
GFinDC
Posted

I wish MY sister with her diabetes, hypothyroidism, high BP, etc. would listen to this little sister who loves her deeply and knows she is a celiac, too. :(

sigh....

They can be stubborn. My younger brother with T-2 diabetes and GI problems almost certainly has celiac, but he won't try the diet. My other brother is probably NCGI at least,but not interested in trying the diet either. I think letting them know once in awhile that it helps and isn't the end of the world to not eat gluten may have an impact eventually. At least I hope so. Whenever I visit I cook gluten-free for them so they see how easy it is. Maybe your sister will change her mind after a while. Stranger things have happened. :)

Gluten free, the way to be!

IrishHeart Veteran
IrishHeart
Posted

Whenever I visit I cook gluten-free for them so they see how easy it is. Maybe your sister will change her mind after a while. Stranger things have happened. :)

They know I am a gourmet cook. They have experienced my dazzling creations. :lol:

But actually adopting the diet themselves? um, I am afraid hell will hold hockey games before my family members step away from the donuts, bread-coated fried foods and subway sammies. Not. Going. To. Happen. :(

I cannot keep saying things because they get mad at me. :unsure:

I continue to pray to the heavens that something intervenes and changes their minds before it's too late.

But you are so right. Stranger things have happened! :)

  • 5 years later...
Geoff01 Apprentice
Geoff01
Posted

Wow! I'm just seeing this 6 years later.  I hope your brother got the memo before now or he may be in serious trouble. All his symptoms can be attributed to celiac disease and if that's the case, he could be a lot worse by now if he still lives on hamburgers and beer.  Lots of good advice by all members.  Stay on gluten until a celiac disease blood screen and biopsy can be done then go gluten-free while you check for other contributing factors.  Its a pain in the ass but such an easy simple cure as opposed to pills and drugs.

I've had peripheral neuropathy for 30 years, slight and mostly numbness on the ball of my left foot but slowly progressing. Now numbness on top of the toes and on the right foot and I'm concerned about potential lameness.  I spent years trying to get a diagnosis of cause so I could treat it but our broken medical system just wanted to give me pills to treat the symptoms only and called it ideopathic. Then 2 yrs ago I realised that I had diarrhea after many meals, esp breakfast (toast and coffee) then 18 months ago, on a visit home, my sister reminded me that she had celiac disease and said that my symptoms sounded similar.  I had dermatitus herpatiformus attacks 9 and 5 years ago and the doctors thought it was some weird form of rubella, increasing gut problems and of course the underlying PN.  I have been for tests in the last year and found that I am negative for celiac disease blood tests ( but was mostly gluten-free at the time), positive for HLA-DQ2.2.  I've been gluten-free for 9 months and when glutened I get bloated, painful and sick 3-7 hours after, and spend 4 days on the couch with belly pain, no appetite and eventually constipation (much sicker than I ever felt when I was eating gluten every day). Recently on a trip to a neurologist to try to get some help with the PN and celiac disease connection, I took a whole bunch of papers. He agreed with me that there were no other obvious causes for PN tested my balance with eyes closed, which I failed, and sent me for a brain MRI. UBOs at the ends of sinuses in both lobes of the brain, similar to the brain of a sever migraine sufferer (or an 80 yr old) he said.  Needless to say I got really serious about my gluten-free diet after that. Hope your brother did too.  The evidence may be partly circumstantial but if you go gluten-free then have a strong reaction when you next have a hamburger as a test, I'd say that's a diagnostic certainty.

Oh!, Also my paternal grandmother and maternal grandfather both died of bowel cancer and my mother has lifelong IBS and Alzheimers.  All New Zealanders, Welsh, Irish and Scottish background.  Perfect storm!

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.