Type 1 Diabetes, Now celiac disease

[Ed in Baja]

Just diagnosed with celiac disease, after 26 years with IDDM. Have had increasing nuero muscular problems for ten years, but always got "what do you expect, you have type 1". peripheral nueropathy, gastro paresis, diabetic myopathy, lots of things suggested, no Dx. one Dr even thought it was stiff man sysndrome. My very active life has gradually been curtailed, and I have coped, until the ataxia started, along with memory problems and mental confusion. A chance conversation with a Nurse PT when I needed an insulin Rx in San Diego led to investigating celiac disease. In 25 years no MD has ever mentioned the possibility...is it outside the comfort zone of the average endo? Oh well.

Over the years when the symptoms got bad I went on extreme diets, the first one being no carb. Later I tried Furhman's Eat to Live Vegan diet. Both helped greatly though at opposite extremes, the one being all protein, the other Vegan. What they had in common was no wheat.

Now, with a week of gluten free diet, muscle pain and ataxia is diminishing rapidly, but the mental slowness persists. Feels like being slightly hypoglycemic (but sugar is normal), or slightly stoned (yes, I inhaled... many years ago, so what) or having had a couple of drinks.

It is scary and frustrating.

I hear conflicting info...mental symptoms go away, no they don't, they get worse even if gluten free, the damage persists but only gets worse if you continue, on and on. I can only surmise that there are a wide range of responses, and the science is not clear. Anyone who has had similar experiences or knows something please respond.

I gave up my profession five years ago, moved to Mexico where it is cheap and warm. But now I am wiped out when I fish, dive, kayak (for a couple of days), can't carve wood anymore,can't windsurf, can't use a hammer without cramping, have trouble on ladders. Can't drink beer, really kicks me in the head. A pisser. Does this get better? I sure hope so.

Ed in Baja

[GFinDC]

Hi Ed,

Yes, it can get better. The general opinion seems to be that nuerolgical symptoms improve more slowly though, perhaps somewhere in the range of 18 months to get better. You get kind of a double whammy on the nerves with celiac disease. First the antibodies can attack the brain in some cases and cause damage. And 2nd the damage to the gut can impair the absorbtion of vitamins making damage hard to heal. You can search on purkinje cells to find some info.

gluten-free is a pretty good diet for diabetics. If you avoid processed foods and stick to whole foods and low carbs/grains you will probably feel better celiac wise. But it may take some time. Don't get too discouraged if things don't improve right away, our bodies need time to recover and adjust to the diet change. But things can improve a lot given some time.

Some getting started on gluten-free threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

How bad is cheating?

Short temper thread

[Takala]

Ed in Baja,

There is a genetic link between celiac and type 1 diabetes - as you have found out - imagine how many other diabetics are out there with the peripheral neuropathy and have no idea why. Mindboggling.

You don't sound like you're too brain fogged yet. Even if you do have some damage (I have documented brain damage, seen from a scan, and still the Neuro from He((

[eatmeat4good]

I was worried the neurological issues would last. Instead, I found they were among the first things to go away. I couldn't think, brain fog, sometimes couldn't complete sentences or comprehend what others were saying, I'd lost my sense of balance and would stumble and fall for no reason. Had to think carefully about walking and not bumping into walls. I had migraine headaches. I don't recall how long it took for all of this to go away, but the balance issue cleared up very quickly (ataxia) and the mental fog improved dramatically in the first few months. I don't have any problems thinking or completing sentences now. It got pretty scary when I couldn't spell four letter words. I told my Dr. I'd lost 80% of my cognitive functioning. It was true. He just looked at me in a puzzled way and said it was probably fibromyalgia. I was so relieved to get myself back. It's really important to be completely gluten free because even traces of wheat can cause some brain/coordination problems but it doesn't last for long anymore. Good luck. I hope this helps you.

[Ed in Baja]

Thank you so much for the kind and considerate responses, as well as being obviously well informed. Very good to know that there are others out there dealing with this stuff successfully.

Regards, Ed

[T.H.]

One thing that may help is the following: no studies have been done on the gluten threshold for gluten ataxia.

There have been studies done on the gluten threshold for Celiac Disease, but those are focused on how much gluten it takes to set off antibodies attacking the intestines. It may be the same for antibodies attacking the brain, but it may not be. Experts don't know, at this point.

Some folks I know with neurological gluten issues adopted a gluten free diet with a lower concentration of daily allowed gluten than the government gluten free standard. That meant that some products, which meet the legal standard for gluten free food (if there is a standard where you live), are avoided.

When this was done, the results were not consistent, unfortunately. Sometimes the damage stopped, so symptoms never worsened, but they never improved. Sometimes the damage healed and symptoms stopped. Sometimes it made no appreciable difference and didn't seem to be related to the gluten.

As has been said, it can take weeks or months to notice a change in symptoms, so adopting a more severe diet, for weeks, before you can even tell if it's helping, can be very frustrating. I personally found it made a difference in my own health, though. I dropped processed foods and grains, started eating veggies and fruits and whole meats, and I noticed symptom improvement. My improvement was rapid once I found the right diet, and my symptoms come back with a vengeance if I vary from my diet. But again, that's not everyone's experience.

[Bubba's Mom]

I've had gluten cause all sorts of symptoms..in all parts of my body. The balance issues/memory/cognitive issues are the scariest for me. On a strictly gluten-free diet (no processed foods other than a cereal) I'm healing more and more all the time.

Now if I accidently come in contact with wheat flour (inhaling it can get me too) the neuro symptoms are the first to show up. They can take as long as 3 months to heal... and slowly I return to "normal".

I went through testing at Mayo Clinic shortly after being glutened when my symptoms were evident. I was told they expected me to return back to my former self as I healed, as long as I was very careful to not ingest gluten again, and I did, so don't be afraid. They are doing more study into the neuro issues, but most Dr.s never make the gluten connection.

Try adding coconut oil to your diet. I use it in cooking and instead of butter on cooked veggies. It has all sorts of good benefits, but the best of all is that it feeds the brain.

You may also want to monitor how dairy effects you? Many of us have trouble with dairy when first going gluten-free. I haven't gotten it back yet. When I do consume it, it effects my brain with migraines and a foggy mind. I was tested and am not allergic to it. The damage in one's intestine can let proteins enter the bloodstream that shouldn't be there, causing a reaction. It's also hard for most newly DXed Celiacs to digest dairy.

Best wishes to you. I hope you get back to where you're feeling like your old self and can do the things you've had to let go. Don't accept defeat!

[txgal748]

Hi Ed,

I was diagnosed with celiac disease May 21st. I was completely surprised because I have never had any gastrointestinal issues. So I have "silent celiac". It turns out that my symptoms are neurological. At the time I went to the Neurologist I was having dizziness every day, but over the last 5 years I noticed some aches and pains that I attributed to getting older. Well along with the celiac disease diagnosis I also learned I had low B12 and low vitamin D. The MD gave me a B12 shot that day and the next morning I felt fantastic, the headache I had for a few months was gone as well as the achiness. I have been gluten free since May 21 and had been wondering how I would know if I had been glutened. I found out this weekend. I had a bite of a sample at the store which ended up having wheat in the seasoning. Saturday morning the pain in my feet returned I have not experienced this pain since May 21st. Now that it is Sunday night the pain has begun to subside. Anyhow, have your vitamin levels checked. Also, look into the paleo diet. A good source is the website Mark's Daily Apple. I tried this approach for two weeks and I actually felt good, but I have been somewhat bad recently. I'm sorry you can't reverse type 1 diabetes with diet but I'm sure you will feel better soon. At least you live in Mexico where most of the food is gluten free, except the processed foods of course.

Take care

[Ed in Baja]

I did a challenge test the other day by accident and got slammed with a return to symptoms...breading on fish that I somehow did not notice. Wow. I guess this really is a one way trip!!

[eatmeat4good]

That is a good way to put it Ed, yes, this is a one way trip!

Gluten will let you know every time you run into it accidentally. It is still shocking to me how fast and severe the cross contamination can be. And I'm two years into this one way trip! Hope you don't have symptoms for long.