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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Short-Term Memory Problems
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9 posts in this topic

I understand that undiagnosed celiac's can contribute to neurological problems, 'brain fog', and that undiagnosed celiac disease can be, for some people, mistaken for ADHD.

However my celiac's was triggered just a year ago by an intestinal parasite, and I only had about 5 months of illness before I was diagnosed (I'm fortunate it was so quickly uncovered).

I've been gluten-free since October, and I've only had a few accidental glutenings.

Before a year ago I had the best memory and organizational skills, in fact other people in my life always counted on my cognitive game being what it was. I was sharp.

Since my celiac's was triggered I have the WORST short-term memory.

I've burnt stuff in the oven and on the stove, if I forget my grocery list I'm lost, I forget to change loads of laundry, and I've even forgotten important appointments.

And, like I said, this is sooo unlike a year ago. Could 5 months of gluten-eating with newly triggered celiacs do that much damage? Can one glutening every 5 to 8 weeks or so be enough to continue damage? I get definite symptoms when I'm glutened, even with cc, so I don't think there are more times that I'm unaware of.

The difference is so dramatic that I don't think it's just aging (I'm only 40).

My vitamin D was borderline low, so I take D as well as a bunch of other vitamins. I exercise fairly regularly and am otherwise healthy.

Any input or help?

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I understand that undiagnosed celiac's can contribute to neurological problems, 'brain fog', and that undiagnosed celiac disease can be, for some people, mistaken for ADHD.

However my celiac's was triggered just a year ago by an intestinal parasite, and I only had about 5 months of illness before I was diagnosed (I'm fortunate it was so quickly uncovered).

I've been gluten-free since October, and I've only had a few accidental glutenings.

Before a year ago I had the best memory and organizational skills, in fact other people in my life always counted on my cognitive game being what it was. I was sharp.

Since my celiac's was triggered I have the WORST short-term memory.

I've burnt stuff in the oven and on the stove, if I forget my grocery list I'm lost, I forget to change loads of laundry, and I've even forgotten important appointments.

And, like I said, this is sooo unlike a year ago. Could 5 months of gluten-eating with newly triggered celiacs do that much damage? Can one glutening every 5 to 8 weeks or so be enough to continue damage? I get definite symptoms when I'm glutened, even with cc, so I don't think there are more times that I'm unaware of.

The difference is so dramatic that I don't think it's just aging (I'm only 40).

My vitamin D was borderline low, so I take D as well as a bunch of other vitamins. I exercise fairly regularly and am otherwise healthy.

Any input or help?

From what I understand, the surgery I had in December triggered my celiac. But, I've probably had it for several years before that. I guess you could call mine "silent" celiac...I don't have the typical extreme symptoms...make sit a little more difficult i think because I'm never sure if it's gluten or other allergies (which are beginning to show up since I've been gluten free). So, I'm now keeping a food journal to track what could be causing these other issues.

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I have similar memory problems. They started a couple years before I went gluten-free, and progressed to not remembering the names of people I've worked with for years. I literally would speak to them in the hallway, go into my office, and look at the office telephone list to discover the name of the person I just spoke to.

Since going gluten-free my memory has gotten better, but it's not what it was. Also, a good glutening will knock short term memory out for a while and send me back to looking at the phone list on the wall, and using other crutches.

I also take Vit D (10,000 mg/day) and other doctor-monitored supplements, including 5HTP and L-Tyrosine.

So, can gluten do that much damage? I think it can. I think it did.

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If your autoimmunity has some neurologic component, I imagine it could affect memory. Over the years, I've learned that you have to be really strict with this diet to get the best benefits, and neuro symptoms seem to be more sensitive than GI symptoms. I used to figure a glutening every now and again was unavoidable. I went super-strict this spring and now my carpal tunnel that flared last summer when I was moving and had to eat out a lot has completely healed. I would say you need to get better control of your diet so you are not glutened every 5-8 weeks and see if the memory problems get better.

Another thing that comes to mind is B12. Be sure you're getting enough as it causes all sorts of neuro issues and all us gluten-sensitive folks tend to run deficient.

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I wonder if my carpal-tunnel-like symptoms are also related to my crappy memory - since they're both seemingly neurological: my hands go numb every night, sometimes 10 times, no matter what position they are in. I think my B levels were tested when I asked my doctor to check a bunch of things including my vitamin D level (partly because of the hand numbness) - but I'll look for the labwork and check. Vitamin D supplements and sunlight haven't helped the numbness, but they did help my energy. I take magnesium here and there, but I'm going to start taking it daily.

I try very hard to avoid glutenings and cc. I think my last glutening was from 'gluten free' honey nut Chex. Sigh.

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I wonder if my carpal-tunnel-like symptoms are also related to my crappy memory - since they're both seemingly neurological: my hands go numb every night, sometimes 10 times, no matter what position they are in. I think my B levels were tested when I asked my doctor to check a bunch of things including my vitamin D level (partly because of the hand numbness) - but I'll look for the labwork and check. Vitamin D supplements and sunlight haven't helped the numbness, but they did help my energy. I take magnesium here and there, but I'm going to start taking it daily.

I try very hard to avoid glutenings and cc. I think my last glutening was from 'gluten free' honey nut Chex. Sigh.

I agree that you should get some sublingual B12 supplements. B12 is one that it can take some time for the labs to show the deficiency and some of the ranges are still set too low. It is a water soluable vitamin so you can't take too much as your body will simply excrete the excess. Give the sublinguals a try for at least a couple of months.

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My memory issues started 3 years ago long before the idea of gluten ever entered the picture. I believe I began Glut intolerance symptoms 30 years ago so no telling how much damage I have. My memory is completely shot. It is extremely bothersome.

Ok not sure why I responded, I wish I had something to share that would help. Or maybe I did... and I just forgot.

*sigh*

Tiff

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I've read that those who are intolerant to gluten may develop plaque in the brain. I'm not a doctor and I may be offbase here, but common sense would tell me that plaque on my gray matter could definitely result in brain fog, dizziness, etc.

I can't find the link, but I recall also reading that the plaque could lessen (at least) when gluten is removed from the diet. My brain fog and dizziness is better, as long as I don't ingest ANYTHING processed, even if it is gluten-free.

I really want to get my "mind like a steel trap", back.

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I've read that those who are intolerant to gluten may develop plaque in the brain. I'm not a doctor and I may be offbase here, but common sense would tell me that plaque on my gray matter could definitely result in brain fog, dizziness, etc.

I can't find the link, but I recall also reading that the plaque could lessen (at least) when gluten is removed from the diet. My brain fog and dizziness is better, as long as I don't ingest ANYTHING processed, even if it is gluten-free.

I really want to get my "mind like a steel trap", back.

I wonder if that is what they are seeing when the MRI's show the UBO's that were found on my MRI before diagnosis. I know if some countries those lesions are diagnostic of celiac, but my neuro is clueless. I would love to have another MRI to see if those lesions are still present since most of my neuro symptoms are gone. If I ever move near to a research facility I may check with a celiac specialist there and see if they want to do another MRI on me. My brain fog and ataxia are in almost total remission now unless I get glutened and even then the ataxia is nowhere near where it was prediagnosis.

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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
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