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I'm Actually Hoping That I Have Celiac Disease.

Woolygimp1207

By Woolygimp1207
in Coping with Celiac Disease

Recommended Posts

Woolygimp1207 Newbie
Woolygimp1207
Posted

I am actually hoping I have Celiac. You guys probaly don't hear that often, however...

My grandmother was diagnosed with Rheumatoid Arthritis, and she's coped with it most of her life. She has told me that she has an allergy to

wheat and fish, but I'm not sure if it's just a intolerance or whether it could actually be Celiac. My mother developed Rheumatoid Arthritis

at a young age, and hers went into long term remission at around age 25. My oldest sister has recently been diagnosed with Rheumatoid Arthritis,

and hers is bad, very bad. It's to the point that she can't leave her house now...

Since no Sjogren's specific antibodies were found in my blood, it shows that the disease is accompanying another autoimmune disease. My ANA was low at 1:40, but the pattern was Nucleolar

which could possibly develop into Sclerodoma (worst case scenario). My only chance of Sjogren's going into remission really is for the cause

to be celiac-related, and since there is a very close relationship between celiac and autoimmune diseases i remain hopeful. According to studies

over 15% of Sjogren's patients turn out to be celiacs.

I'm definately lactose intolerant. I've got intermittent loose bowels (most float and look fatty from what I can tell), they happen randomly and

I've been unable to pinpoint them to any certain types of food. With the onset of my 'symptoms' I've gained about 35lbs, have no abdominal pain, and I don't notice any

immediate reaction to gluten. I tried a gluten free diet last month, the dryness from Sjogren's actually responded but this could just be due

to the random nature of the disease itself. Some days I felt absolutely great, better than I've ever felt, and I lost about 10lbs (could be

attributed to eating healthier). Before going on the diet my weight would change 4-6lbs over the course of hours.

I have a biopsy in two weeks, so I decided to start eating normal foods again so not to tamper with any results, and I didn't immediately notice

any symptoms. I haven't felt so great though in the past few days. It's odd though, I'll randomly get bad diarrhea out of nowhere, and it's

definately not (immediately) after I've ingested anything like milk or gluten.

According to the study, the SS patients who did not have Celiac had intestinal damage of other origins so that could be the culprit.

However it'd be nice to find out that Celiac is causing the string of autoimmune diseases in my family, even though it may be unlikely.

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Jestgar Rising Star
Jestgar
Posted

Even if the symptoms aren't due to Celiac, many people get some relief of symptoms of RA from avoiding gluten. (Don't know about SS.) You could go strictly gluten-free for 6 months after your biopsy and track all the changes in symptoms. Maybe it would help.

Woolygimp1207 Newbie
Woolygimp1207
Posted
  • Author
Even if the symptoms aren't due to Celiac, many people get some relief of symptoms of RA from avoiding gluten. (Don't know about SS.) You could go strictly gluten-free for 6 months after your biopsy and track all the changes in symptoms. Maybe it would help.

Most Celiac cases that I've been reading show signs of immediate reaction to gluten. This isn't the case with me, even when I went off the gluten-free diet and started eating normal foods again it was around 4 days before I showed any signs of feeling worse.

jerseyangel Proficient
jerseyangel
Posted
Most Celiac cases that I've been reading show signs of immediate reaction to gluten. This isn't the case with me, even when I went off the gluten-free diet and started eating normal foods again it was around 4 days before I showed any signs of feeling worse.

Four days is not unheard of at all. Just from being around here for a while, I know that some people react almost instantly, while for others, it can be days before the symptoms hit. It's very individual--the timing, severity and variety of symptoms.

Mtndog Collaborator
Mtndog
Posted

I'm like you...I was hoping it was celiac because it was at least manageable by diet and not medication or worse, untreatable.

Auto-immune disorders often co-exist and gluten can make existing symptoms worse. I only have osteo-arthritis and gluten makes my arthritis horrible.

Also, like you, when I went gluten-free I had become lactose intolerant (literally like overnight) after 37 years of inhaling copious amounts of dairy and had horrible bowel movements!

I waas relieved to be diagnosed (even if it was informal at first)

happygirl Collaborator
happygirl
Posted

Just because its not obvious gluten doesn't mean that it doesn't have gluten in it.....gluten is in everything :)

You also want the bloodwork run for Celiac...the FULL panel. You can find it listed on Dr. Alessio Fasano's website at www.celiaccenter.org and click on "FAQs". He is an expert in Celiac.

Before I was dx'ed with Celiac, I had such horrible arthritis symptoms. My tests never came back positive for RA but the drs didn't know what the problem was. I was debilitated at age 22. The rheumatologist told me I would probably be confined to a wheelchair within a few years and I would never have children (I was newly married and this was all devastating). I went gluten free after positive bloodwork and it turns out all my "symptoms", including RA type symptoms, GI symptoms, etc etc were all gluten related. I never had any sort of arthritis, but it was caused by gluten. Go figure.

ArtGirl Enthusiast
ArtGirl
Posted
It's odd though, I'll randomly get bad diarrhea out of nowhere, and it's

definately not (immediately) after I've ingested anything like milk or gluten.

Before I discovered that it was gluten causing all my GI problems, it was like you say - just out of the blue - pow - hit me like a ton of bricks. It was very puzzling. Now that I've been gluten-free (and corn-free - that's an issue also with me) I have been able to determine that it takes at least 15 hours (or more) for GI symptoms to hit me after ingestion. This makes it very difficult to tell what's causing the problem.

Symptoms from glutening can last several days up to two weeks. When one is actively eating gluten I think that the GI tract is in a constant upheaval, sort of like a roller coaster with ups and downs. What may seem like one's symptoms are clearing up may just be a lull in the continuing storm. Which makes it even more puzzling as to what is actually causing the problems.

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Woolygimp1207 Newbie
Woolygimp1207
Posted
  • Author

The arthritis hasn't hit me yet; even so my main complaint is the dry skin that is supposedly accompanying my Sjogren's. It's only on my face, and tips of my fingers but it's annoying having to put on tons of moisturizers (all of which don't see to do much good). Not only that but it has interfered with some of my hobbies like diving. 45 minutes in salt water + dry skin = disaster. It is also annoying, sometimes it feels like someone has pulled a plastic bag over my face it feels that tight and I'm only 20.

I also don't have bad GI problems like you guys. For the last three years I've had intermittent diarrhea that happens once every 2 weeks for around 2-3 days, and sometimes everythings normal and the other times it looks real weird. Milk makes things much, much worse but even without milk these things just randomly happen.

I also get very fatigued after ingesting certain foods. I was taking some fish oil supplements, and 30 minutes after taking them I got diarrhea and felt very fatigued. Maybe i'm also allergic to seafood, but I'm hoping that's not the case as I live in Louisiana :P. Anyway I'll keep you guys posted and thanks for the support.

Edit: How long did it take to notice an improvement for those that have had alleviation in their autoimmune/arthritis symptoms?

Nancym Enthusiast
Nancym
Posted

Just be aware, having been gluten free you're likely to have a negative biopsy. It can takes months and months and months for the damage to reappear.

I know what you mean though, I am hoping my autoimmune diseases were/are caused by gluten because there's always that chance I won't develop any additional ones AND perhaps the ones I have now will get much much better (they already have!).

I also felt like I had a lot of Sjogren's symptoms, dry eyes and mouth, and they've completely cleared up.

Woolygimp1207 Newbie
Woolygimp1207
Posted
  • Author
Just be aware, having been gluten free you're likely to have a negative biopsy. It can takes months and months and months for the damage to reappear.

I know what you mean though, I am hoping my autoimmune diseases were/are caused by gluten because there's always that chance I won't develop any additional ones AND perhaps the ones I have now will get much much better (they already have!).

I also felt like I had a lot of Sjogren's symptoms, dry eyes and mouth, and they've completely cleared up.

How long did it take? I was gluten free for one month and I could've sworn I started feeling better, but towards the end of the 1 month mark I didn't feel so well for 3-4 days.

Nancym Enthusiast
Nancym
Posted

It took a few months I think. It was so gradual I didn't even notice it until I realized I hadn't been using my eye drops! I still have incredibly dry skin though. :\

My ankylosing spondylitis is much better though. I remember being so sore and waking up at night feeling miserable. I'd have aches in most of my joints and tendons, muscles spasming all over the place. Now I haven't had a bad spasm for months, my tendonitis in arm and jaw are gone. No pain in the ribs, none in the wrists or fingers, feet are better, hips are better. It has been about a year and a half so far. :) My energy and brain are doing much better. I could wish for more energy though. Although as long as I'm regular with the exercise that improves too.

I think getting dairy out of my diet helped a lot too. I have it occassional in the form of goat milk Kefir for the probiotic value but other than that, I avoid it.

Woolygimp1207 Newbie
Woolygimp1207
Posted
  • Author

Update: I don't actually have Sjogren's at all, it's hypothyroidism.

wowzer Community Regular
wowzer
Posted
I am actually hoping I have Celiac. You guys probaly don't hear that often, however...

My grandmother was diagnosed with Rheumatoid Arthritis, and she's coped with it most of her life. She has told me that she has an allergy to

wheat and fish, but I'm not sure if it's just a intolerance or whether it could actually be Celiac. My mother developed Rheumatoid Arthritis

at a young age, and hers went into long term remission at around age 25. My oldest sister has recently been diagnosed with Rheumatoid Arthritis,

and hers is bad, very bad. It's to the point that she can't leave her house now...

Since no Sjogren's specific antibodies were found in my blood, it shows that the disease is accompanying another autoimmune disease. My ANA was low at 1:40, but the pattern was Nucleolar

which could possibly develop into Sclerodoma (worst case scenario). My only chance of Sjogren's going into remission really is for the cause

to be celiac-related, and since there is a very close relationship between celiac and autoimmune diseases i remain hopeful. According to studies

over 15% of Sjogren's patients turn out to be celiacs.

I'm definately lactose intolerant. I've got intermittent loose bowels (most float and look fatty from what I can tell), they happen randomly and

I've been unable to pinpoint them to any certain types of food. With the onset of my 'symptoms' I've gained about 35lbs, have no abdominal pain, and I don't notice any

immediate reaction to gluten. I tried a gluten free diet last month, the dryness from Sjogren's actually responded but this could just be due

to the random nature of the disease itself. Some days I felt absolutely great, better than I've ever felt, and I lost about 10lbs (could be

attributed to eating healthier). Before going on the diet my weight would change 4-6lbs over the course of hours.

I have a biopsy in two weeks, so I decided to start eating normal foods again so not to tamper with any results, and I didn't immediately notice

any symptoms. I haven't felt so great though in the past few days. It's odd though, I'll randomly get bad diarrhea out of nowhere, and it's

definately not (immediately) after I've ingested anything like milk or gluten.

According to the study, the SS patients who did not have Celiac had intestinal damage of other origins so that could be the culprit.

However it'd be nice to find out that Celiac is causing the string of autoimmune diseases in my family, even though it may be unlikely.

wowzer Community Regular
wowzer
Posted

That is kind of how I feel too. My celiac blood test came out negative. I believe I may have DH. My little sister was diagnosed with celiac disease when she was almost a year old. I have been reading many posts on here and I have so many of the symtoms. I have been taking synthroid for years since being diagnosed with a goiter. I have had many very itchy rashes over the years in my life. When I look at the pictures of the DH many of them look like some of the rashes I've had. Also does anyone get little blisters on the edge of the eyelids by the eyelashes? I can always tell when I'm going to get those.

SillyBoo Newbie
SillyBoo
Posted

Interesting! I haven't actually noticed any blisters, but I get intense itching in that exact location when I get glutened. Strange...

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