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


Cara in Boston

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GFinDC Veteran

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! :)


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IrishHeart Veteran

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

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

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

GFinDC Veteran

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

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

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!


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    • Jmartes71
      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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