Jump to content
  • 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):

All These Symptoms Can’T Be Celiac, Can They?


Integrous

Recommended Posts

Integrous Apprentice

I am a 37-year-old male.  For the past 4 or 5 years, I have been experiencing slow but progressive memory loss.  For the past 2 or 3 years, I have been experiencing a slow but progressive onset of what I can only describe as a haze or fog in my brain that prevents me from concentrating or understanding complex things.  Over the past month, I’ve noticed some mild problems with balance, equilibrium and vision, as well as feeling “hot spots” and weakness in my arms and legs.

 

To be perfectly honest, my symptoms have me terrified.

 

A recent blood test showed positive for endomysial antibodies and a t-Trasnglutaminase value exceeding 100 U/mL, and I was told that I have celiac disease and to go gluten-free.

 

I do not fully understand what my blood test results mean.  And, I have not yet seen the specialist and do not trust websites for medical information, so I don’t know all that much about celiac disease.  But, it’s hard for me to believe that my symptoms could be caused by celiac disease. 

 

I am hopeful that someone on this forum who is more educated than I can tell me which, if any, of my symptoms could be attributable to celiac disease, as that might ease my mind a bit.  Many thanks.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

You should be able to trust this site for info:

Open Original Shared Link

GFinDC Veteran

Hi Integrous,

 

Celiac disease can cause damage to the gut lining, which impairs the ability to absorb nutrients from diet.  Without proper levels of vitamins and minerals in your body, it can't heal or maintain itself correctly.  That's called mal-abosorption.  As you can imagine, mal-absorption can affect all parts of the body, including the brain.  We usually refer to the memory and mental sharpness issues as brain fog on this forum.  If you stick around a while you will see that it is an issue brain fog affects many of us.  Our brains are mostly fat and nerves, and B-vitamins are needed to heal nerves grow.  Besides the mal-absorption issues, there is also something called gluten ataxia.  That is rarer though.  I used to have memory issues and mood issues also, getting angry for no reason, short temper.  But that went away after being gluten-free for a while.

 

i suggest you get  a written copy of you celiac test results from your doctor,  You should also get a blood test for mal-absorption to see if you are low on anything critical.  A bone density scan is also done sometimes as bones can be weakened also.

 

Coconut oil is supposed to be very good for our brains.  You might try some in your cooking.

 

Open Original Shared Link

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin and/or zinc.

NoGlutenCooties Contributor

Integrous - Welcome to the Forum!

I know sometimes it is hard to imagine that something as seemingly simple as gluten (which is supposed to be a food) could cause such extensive and serious problems.  But it can and it does.  As GFinDC explained, you are not getting nutrients out of your food because of the damage done to the villi by the antibodies that your body produced to try to kill the gluten.  I think of it as being a starvation victim.  If you had barely eaten enough to survive over the course of the last several years would you be surprised that it had started to affect your brain function?  Would you be surprised that your balance is off?  You have been eating food, but your body hasn't been using it - so your body has slowly been starving to death.

 

The good news is, once you stop eating all gluten your body starts to heal and all of those nasty symptoms will go away.  Sometimes it takes awhile, but you will heal.

nvsmom Community Regular

Welcome to the board.

 

Those symptoms can be gluten related. With a tTG test over 100 and a positive EMA, it's a sure thing that you have celiac disease.  Unfortunately nerve symptoms (pain or cognitive issues) tend to take the longest to change. Hang in there and give the gluten-free diet a few months or years and I am guessing you'll see improvements... hopefully sooner rather than later.

dilettantesteph Collaborator

You should research the neurological affects of celiac disease.  I think that is where the thinking impairment comes from.  It comes on too quickly when accidentally glutened for it to be due to nutritional deficiencies in my opinion.  There are celiac disease neurologist specialists who also hold that opinion.  It is an autoimmune reaction.  It doesn't only affect the gut.  

 

My 16 year old son is out of school right now for the same reason as he got accidentally glutened.   He goes from the top of his class to failing all his tests when he attends school glutened.   When I am glutened, I can't even read the newspaper.  I can't think more than one step ahead.  I am a highly educated person and it drives me crazy to not be able to think at all.  I hope you find quick improvement with the gluten free diet.

Integrous Apprentice

You should research the neurological affects of celiac disease.  I think that is where the thinking impairment comes from.  It comes on too quickly when accidentally glutened for it to be due to nutritional deficiencies in my opinion.  There are celiac disease neurologist specialists who also hold that opinion.  It is an autoimmune reaction.  It doesn't only affect the gut.  

 

My 16 year old son is out of school right now for the same reason as he got accidentally glutened.   He goes from the top of his class to failing all his tests when he attends school glutened.   When I am glutened, I can't even read the newspaper.  I can't think more than one step ahead.  I am a highly educated person and it drives me crazy to not be able to think at all.  I hope you find quick improvement with the gluten free diet.

Thanks for the reply.  Am I correct that you and your son go back to thinking clearly once the gluten wears off?  I'm looking for a glimmer of hope that my neuroligical effects will go away, as it is starting to affect my work and interactions with family/friends.


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

I am sorry that I didn't respond to this sooner.  I didn't see it until someone pointed it out to me.  You have a kind person watching out for you there.  Yes, he does go back to thinking clearly when we rid his diet of all gluten contamination.  He even goes on long runs.  Actually, he is recovering now.  He was back at school yesterday.  I also go back to thinking clearly when I have a good clean diet.  Celiac disease can cause these kinds of problems.  It is not well known and you are very lucky to have had a doctor who thought to test you for celiac disease.  Many of us go for many more years before someone finally thinks of it.

 

I have to admit that I haven't spend much time studying neurological effects of celiac disease.  Some names that you could look up are the neurologists Perlmutter and Hadjivassiliou.  I think that they deal with more physical neurological symptoms.  Green at Columbia has research papers about children with learning disabilities and celiac disease which may be more related to what are experiencing.

Another neurologist gave this talk at my local group: Open Original Shared Link

 

A big problem with is that you need a clear thinking mind to figure this out, but you need to figure this out to get a clear thinking mind.  Just try to take steps in the positive direction and you will get there.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,079
    • Most Online (within 30 mins)
      10,442

    jchamp080
    Newest Member
    jchamp080
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...