Is This Silent Celiac??

[Anita99]

I'm not sure if I am clinically diagnosed.  I've had issues with diet, IBS, my entire life I am 63yrs old.  I've been able to control most of my issues by adjusting my diet to a carb free diet.

2 years ago I started eating carbs. My grandaughter moved in so I started adjusting the menu towards her desires.

Last December I started having neck pain.  I noticed if I had any alcohol it would become much worse.  In May I had an attack with extreme pain in my neck and my SI joints with blurry vision.  I tried to get to a Rheumatologist but with Covid, I couldn't get in.  I went on Prednisone and started experimenting with diet and realized the no carb diet worked for the pain.  By the time I finally got into the Rheumatologist it was late July.  He took blood said he thought it was silent celiac. So I went gluten free. The rash on my arms that was there for 4 years went away in 3 days.  The pain in my neck and SI joints was gone in 4 weeks.   My blood work came back HLA DQ8 positive but that was it nothing else.  Of course being gluten free due to my diet change gave false results on antibodies.  I'm due for colonoscopy/ endoscopy which was negative for celiac in 2014.

Last week on Wednesday I had 2 Irish coffees made with Irish Whiskey.  By Friday I was in severe pain with Saturday being my worst day.  I needed pain pills, which I absolutely hate.  I couldn't walk my neck was in spasm. My eyesight blurry.  I thought Distilled liquors were gluten free!  

Has anyone else had a series of severe arthritic pain in the tendons and the place where they attach to the bone.  I know I have issues with gluten but I'm not convinced there isn't another autoimmune disease lurking that is causing these severe attacks.

Confused

 

[trents]

Some of the symptoms you describe are classic Celiac Disease symptoms. The rash for instance. Could that be dermatitis herpetiformis?

Celiac Disease is an autoimmune condition and when you have one autoimmune disease it is common to have others such as RA, Lupus, diabetes, Hashimoto, etc. Bone demineralization (osteoperosis, osteopenia)  is also very common. Have you had a bone scan done to check for bone density? That could explain the SI and neck pain. 

The only one of your symptoms that I have not heard of as being connected with celiac disease is the blurred vision and the neck pain.

There is currently a spirited discussion on the forum about whether or not distilled alcohol products can cause a gluten reaction in Celiacs. The very nature of the distilling process would seem to rule it out but some of our members are adamant about having a celiac reaction whenever they drink drink distilled spirits made from wheat or barley. So some are wondering if there small protein fragments from gluten that are still being conveyed in the distillation process. Personally, whenever I drink more than about three ounces of any alcoholic beverage I wind up with a migraine but it could just be the effect of the alcohol itself.

Funny you should mention neck pain. Twice in the past month I have developed severe neck pain with stiffness such that I could not rotate my head more than about three degrees. I cannot think of anything I might have done lifestyle wise to precipitate this. I have been on hydrocodone and flexeril for the past three days and it's finally starting to loosen up. And I have been eating gluten-free for years now. I have an appointment with a physical medicine doctor towards the end of the month to investigate this issue. 

Unfortunately, if you have been eating gluten free it will invalidate the blood antibody and maybe even the endoscopy/biopsy. It is recommended that people be eating significant amounts of gluten for at least six weeks before getting testing done.

[Anita99]

Yes I've had bone density tests.  Osteopenia for the last 10 years.   The pain just seems so sudden and extreme.   I hurt my back years ago.  I have lax joints.  SI joint pops too much neck has lost its lordosis so they are my points of inflammation in my spine.  Think that is why the autoimmune response sets up in those spots.  I have a similar response to alcohol.  But not to white wine.

[Scott Adams]

If you have been gluten-free for such a long time then no current tests done now would give you correct results. You must be eating gluten daily for 4-6 weeks for blood tests to be accurate, and 2-4 weeks for the endoscopy to by accurate.

If you are certain that you have issues with gluten, and are positive for both DQ2 and DQ8, perhaps you don't need confirmation at this point? 

Distilled alcohols are gluten-free, but have you also explored other food intolerance issues, for example cow's mil, corn, soy, etc.?

Here are some article on arthritis and celiac disease, and I too had severe neck issues for ~5 years, even after I wen gluten-free. I attributed them to malabsorption.

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/arthritis-and-celiac-disease/ 

[Anita99]

Thank you for the articles.

  I'm sure I have gluten issues.  If I even touched beer in my twenties my legs would swell mid beer.   For the last 4 years I've had horizontal lines/dents on all my nails. My hair has been dry. My nails so soft they would peel. I had rosacea, I've always had a healthy complexion but for the last 4 years I have looked sallow.  All of the above symptoms are gone. My color came back at 4 weeks.   

 I think 2016 was the year gluten started really hurting me.  I never even thought about gluten being an issue.  I only knew I felt better eating low carb, no carb diet.  Years of saying I can't eat that.  Don't add salt!  I'd swell up 7lbs heavier for 2 days.  Now I can eat salt and I hardly gain 1 or 2 lbs.  
It's crazy the havoc it has played in my life.  People would look at me like I was crazy and all I would say is I'm carb and salt sensitive.
 

[trents]

Eliminating carbs in your diet also eliminated the major sources of gluten. The next step would be eliminating those processed foods, meds and supplements that contain trace amounts of gluten and to give attention to cross contamination.

[Ouchybelly27]

Depending on where the neck pain is it could be from the vagus nerve which is associated with celiac. On another forum posted on this site, someone else was complaining of the vagus nerve and experienced really bad attacks that resulted going to the emergency room. Another person complained of having iritis also associated with celiac. Hope this info helps. 

[Scott Adams]

I think more research needs to be done on this particular symptom of neck/shoulder pain and celiac disease. It's been mentioned here too often for it not to be a common problem for those with celiac disease. Thanks for bringing up the vagus nerve connection...

[cristiana]

On 11/9/2020 at 6:29 PM, Anita99 said:

 

Has anyone else had a series of severe arthritic pain in the tendons and the place where they attach to the bone.  I know I have issues with gluten but I'm not convinced there isn't another autoimmune disease lurking that is causing these severe attacks.

Confused

 

I had terrific SI joint pain for a long time. It started up with a vengeance around the time of my diagnosis and took a while to subside but it still comes back from time to time. It used to be worse in my left side, now it's on my right side just as I speak.  It can be very painful - a sort of tightness, and burning.   

I also have a weird thing from time to time which I read about years ago on this site.  A real feeling of pressure in my upper back, almost like someone is pressing down upon my shoulders or between my shoulders.  Sometimes it is pain, but more often an incredible pressure or tightness. I am sure it is an inflammation thing.  Again, this first started around the time of my diagnosis.  

 

Here's an interesting paper you may wish to look at.

 

https://pubmed.ncbi.nlm.nih.gov/19504097/

[Threecents]

On 11/9/2020 at 1:29 PM, Anita99 said:

I'm not sure if I am clinically diagnosed.  I've had issues with diet, IBS, my entire life I am 63yrs old.  I've been able to control most of my issues by adjusting my diet to a carb free diet.

2 years ago I started eating carbs. My grandaughter moved in so I started adjusting the menu towards her desires.

Last December I started having neck pain.  I noticed if I had any alcohol it would become much worse.  In May I had an attack with extreme pain in my neck and my SI joints with blurry vision.  I tried to get to a Rheumatologist but with Covid, I couldn't get in.  I went on Prednisone and started experimenting with diet and realized the no carb diet worked for the pain.  By the time I finally got into the Rheumatologist it was late July.  He took blood said he thought it was silent celiac. So I went gluten free. The rash on my arms that was there for 4 years went away in 3 days.  The pain in my neck and SI joints was gone in 4 weeks.   My blood work came back HLA DQ8 positive but that was it nothing else.  Of course being gluten free due to my diet change gave false results on antibodies.  I'm due for colonoscopy/ endoscopy which was negative for celiac in 2014.

Last week on Wednesday I had 2 Irish coffees made with Irish Whiskey.  By Friday I was in severe pain with Saturday being my worst day.  I needed pain pills, which I absolutely hate.  I couldn't walk my neck was in spasm. My eyesight blurry.  I thought Distilled liquors were gluten free!  

Has anyone else had a series of severe arthritic pain in the tendons and the place where they attach to the bone.  I know I have issues with gluten but I'm not convinced there isn't another autoimmune disease lurking that is causing these severe attacks.

Confused

 

Dear Confused, The endoscopy will show if you have had Celiac, as it shows both recent and long term damage to the small intestines. I am not a doctor, so I maybe way off base, but I don't think you have Celiac, but a problem with carbohydrates and alcohol. Maybe they are both metabolized into something that you are sensitive to. Perhaps you lack an enzyme needed to get rid of that metabolite. 

[Anita99]

Yes it just seems like such a strange immune response.  I guess if the gluten gets into the blood stream it has to go somewhere.  My first attack was so severe in the neck, I had golfball size lumps at the enthesis ( tendon attachments to bones) at the back of my skull.  The following night the exact same on both SI joints.  I couldn't open my mouth.  My head was jerked back so much I had a couple double chins.  Terrible!  SI joints would lock up in bed if I didn't keep moving my legs.  I had to have Prednisone.

This time the attack started mostly as right sided SI joint pain then both sides then, only the left side.  The neck pain was a bit worse but not severe.  Then yesterday it was  the tendons from my waist to the back of my head on the left side only I couldn't straighten up.  Don't ask me how it can move around so much.  Also I get a metallic taste during the attack.  Really I can only tell when drinking water.  Usually water tastes sweet to me.  During the attack it tastes like plastic or metal. 

It's a week tomorrow since I had the coffee with whiskey.  The pain is mostly in my left hip  today and that's a new location. 

The tendons I think called trochantor(spelling) across the hip and butt are very sore on both sides, but worse on the left.   My finger tips hurt off and on, but the blurry vision has subsided.  It's a good thing I'm not explaining my symptoms to a psychiatrist.  LOL.   No wonder so many Doctors are skeptical over gluten sensitivity.  The symptoms seem to move all over on me.  I keep wondering if I dont have psoriatic arthritis on top of all this.  But that could be related to gluten too so I've read.

[Threecents]

3 minutes ago, Anita99 said:

Yes it just seems like such a strange immune response.  I guess if the gluten gets into the blood stream it has to go somewhere.  My first attack was so severe in the neck, I had golfball size lumps at the enthesis ( tendon attachments to bones) at the back of my skull.  The following night the exact same on both SI joints.  I couldn't open my mouth.  My head was jerked back so much I had a couple double chins.  Terrible!  SI joints would lock up in bed if I didn't keep moving my legs.  I had to have Prednisone.

This time the attack started mostly as right sided SI joint pain then both sides then, only the left side.  The neck pain was a bit worse but not severe.  Then yesterday it was  the tendons from my waist to the back of my head on the left side only I couldn't straighten up.  Don't ask me how it can move around so much.  Also I get a metallic taste during the attack.  Really I can only tell when drinking water.  Usually water tastes sweet to me.  During the attack it tastes like plastic or metal. 

It's a week tomorrow since I had the coffee with whiskey.  The pain is mostly in my left hip  today and that's a new location. 

The tendons I think called trochantor(spelling) across the hip and butt are very sore on both sides, but worse on the left.   My finger tips hurt off and on, but the blurry vision has subsided.  It's a good thing I'm not explaining my symptoms to a psychiatrist.  LOL.   No wonder so many Doctors are skeptical over gluten sensitivity.  The symptoms seem to move all over on me.  I keep wondering if I dont have psoriatic arthritis on top of all this.  But that could be related to gluten too so I've read.

Are you on Fosamax (alendronate) for osteopenia? I just read that can cause metallic taste, blurred vision, and joint pain.

[Anita99]

No I'm not on anything for osteopenia.  I thought maybe my kidneys were causing the taste.  But my bloodwork and urinalysis show fine for Kidney.  Maybe I should push for a kidney 24 hour screen for protien.  I had high liver enzymes ALT 51 my AST was only slightly elevated I think 31 for over 10 years.  They all went back to normal after going glutenfree and no alcohol.

[trents]

Elevated liver enzymes was what eventually led to my Celiac Disease diagnosis. About 20% of Celiacs experience this. You don't want to damage your liver. It's a very important organ.

[Threecents]

12 hours ago, trents said:

Elevated liver enzymes was what eventually led to my Celiac Disease diagnosis. About 20% of Celiacs experience this. You don't want to damage your liver. It's a very important organ.

Trents, You just solved the mystery of why I my alk phos was mildly elevated for about 20 years before my diagnosis. It went down to normal after I went gluten free following my diagnosis. My gastroenterologist did not know of a link.

[trents]

Send this to your GI doc: https://www.cghjournal.org/article/S1542-3565(03)00313-6/fulltext#:~:text=In addition%2C celiac disease may,on a gluten-free diet. This factoid is readily available on the internet and has been for some years. I'm surprised your GI doc was unaware of the connection.

Edited November 11, 2020 by trents

[Anita99]

It's amazing how many diagnosis are missed.  I still don't think many Dr's take this disease as seriously as they should, believing it's more fad than disease many times.  Also maybe diagnosis is elusive in some patients.   It's interesting that I am also a 4 time DVT patient.  Dumbfounded that I was still getting clots while anti coagulated.  I'd had botched stent placement and ended up in Mayo Clinic Rochester, MN.   I was diagnosed with high Homosystine.  The put me on Folate to bombard it.  I do have the MFTHR gene mutation so they felt that was the explanation.  Google Thrombophlebitis and Celiac Disease.  Celiac causes Hyperhomosystine levels which cause blood clots.  Since being gluten free my bad leg is barely swollen.  Crazy the things that are finally explained after going gluten free.

[trents]

In our current healthcare climate, most doctors have a hard time thinking outside the box. Everything is metrics driven. Why did they give you folate for the high homosystine levels? Does folate counteract that?

Edited November 11, 2020 by trents

[Anita99]

Yes I take perscription folplex 2.2 the homosystine dropped to normal in a couple months. It works!  MTHFR mutation causes it seems so does Celiac.

[cristiana]

Anita - I'm interested that you have had problems with thrombophlebitis.  I had phlebitis when I was a teenager for many months.  I was told at the time I had 'sticky' blood.  Is your hemoglobin within normal limits?   Mine is high normal even though my blood iron is borderline normal.   

[Anita99]

My Hemoglobin is usually 15 normal.  No one has ever suggested high hemoglobin as a cause of bloodclots to me.  Having clotting issues as a teen is rare.  I had my first at 13yrs old.  Mine was brought on because my mother was very upset at my acne and took me to her GYN.  In the early 70's they were bragging that birth control pills clear acne.  Within 2 months I had a DVT in my common Illiac Vein.  It was never diagnosed as such back then.  But they took me off that pill and told me never ever take it again. It left permanant swelling on my left hip and buttock.  Which is why Mayo said it definitely was a DVT.  They say Celiac disease patients have a higher than normal rate of DVT.  MTHFR mutation as well.  Add Estrogen from the pill and my mild Ehlers Danlos also not bad enough to be diagnosed.  But I've had dislocations. Double jointed.  Classic stuff.  PT says I have it.  

Its amazing you never had another clot.  Had you fallen or bruised your leg.  Was it your left leg?  Left leg involvement is called May Thurners Syndrome.  Your the first I've met also have a clot in their teens.

[Scott Adams]

In case anyone is interested, here are the summaries we've done on the connection between celiac disease and liver issues:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/liver-disease-and-celiac-disease/ 

 

[cristiana]

10 minutes ago, Anita99 said:

My Hemoglobin is usually 15 normal.  No one has ever suggested high hemoglobin as a cause of bloodclots to me.  Having clotting issues as a teen is rare.  I had my first at 13yrs old.  Mine was brought on because my mother was very upset at my acne and took me to her GYN.  In the early 70's they were bragging that birth control pills clear acne.  Within 2 months I had a DVT in my common Illiac Vein.  It was never diagnosed as such back then.  But they took me off that pill and told me never ever take it again. It left permanant swelling on my left hip and buttock.  Which is why Mayo said it definitely was a DVT.  They say Celiac disease patients have a higher than normal rate of DVT.  MTHFR mutation as well.  Add Estrogen from the pill and my mild Ehlers Danlos also not bad enough to be diagnosed.  But I've had dislocations. Double jointed.  Classic stuff.  PT says I have it.  

Its amazing you never had another clot.  Had you fallen or bruised your leg.  Was it your left leg?  Left leg involvement is called May Thurners Syndrome.  Your the first I've met also have a clot in their teens.

Wow! It was my left leg. 

I was working in France, crazy hours in an auberge, desperate to learn the language so happy to work from 6am to midnight.  I was on my feet all day.  I think I knocked my leg or something one day and the swelling wouldn't go down.   I haven't ever asked to see my doctor's reports of the time but the words 'sticky blood' stuck in my mind, excuse the pun.  He wisely advised never to smoke or take the pill.  My maternal grandmother also had phlebitis quite young too, no idea if she was a coeliac.

My hemoglobin is around 15.5 which is high normal for our labs here (UK) and because of that my gastroenterologist doesn't want me to supplement iron in case it leads to polycythemia.   So my ferritin bumps along at 10-11, just over the acceptable level.  

[Scott Adams]

Oh, and here are some articles on the MTHFR mutation and celiac disease:

https://www.celiac.com/search/?&q=MTHFR&type=cms_records2&search_and_or=and 

[Anita99]

Wow Scott!  Great articles!