Overlapping Symptoms

[SLEteen]

Hey everyone, I made an account just for this as I've had some overlapping symptoms that I'm concerned about. Please bear with me, this is pretty long.

 

First off, I was diagnosed with SLE about 7-8 years ago when I was 12. The symptoms I had back then were consistent fever and chills. Not too sure what the blood test results were, but I was finally diagnosed with SLE.

 

However, in the recent few months, I kept getting bloated after eating specific foods like bread/pasta. I mentioned this to my doc but he seems to think it was the lactose causing it.

 

All throughout my 7-8 years of being diagnosed with SLE, I only ever had one flare where the symptoms were again, fever and chills (not sure about blood tests results).

 

I've heard a lot about celiac's masquerading as SLE and wanted to see if my current symptoms were worth looking into?

 

I'm currently experiencing:

1. severe bloating - I would belch and relief the gas but I would start bloating again, continuing for the entire day

 

2. hives/welts? - it sort of "pops" out of my body and flattens into a flat rash after a few days, usually one or two on random parts of my body. The only full-out-whole-body-type hives I have was a few years ago & the more you scratch it, the bigger it gets

 

3. rashes - very itchy, on random parts of my body that are not exposed to sunlight (i.e. back, stomach)

[SLEteen]

Forgot to mention:

I have “chicken skin” on my knees for as long as I remember. Small purple spots/discolorations - petechiae? Only 2-3 of them on my body.

 

I was diagnosed with GERD 2 years ago, though that is under control now, no more heartburn, etc. Before that, I had abdominal colic. At the time, I was having exams and was putting on weight even though I did exercise (though not regularly). Last year, I lost almost 10 kilos within 6 months doing nothing but it did coincide with a chronic sinus infection.

 

I am ADHD-inattentive. Brain fog and migraine once in a while. I'm almost 20 years old and my growth plate is still open on one side of my jaw (I'm female).

 

There are some symptoms that I'd like to clarify too:

1. What counts as constipation? I don't poop everyday, maybe once every few days and the stool is hard, often cutting me as I pass it out.

 

2. I have some sort of muscle spasm in my hands - carpal tunnel?. It's not so much pain but rather discomfort that extends from my wrist to my forearms. Most of the time, when I rest my arm, it is in a natural, relaxed state but sometimes, when I get the "spasm", it tenses up and I cannot get it to be relaxed. Sometimes I feel this tension in my chest too.

 

3. Pins and needles in my legs when I sit cross legged. It starts within 10-15mins of sitting down.

[kareng]

Sure, you could have Celiac disease.  You could have other issues, too.  I am not sure what "SLE" is referring to and wouldn't want to assume. If you want to get tested for Celiac, continue to eat gluten until all testing is finished.  Celiac testing doesn't work if you aren't eating gluten.

[SLEteen]

Oh, SLE is just another name for the autoimmune disease, lupus.

 

Would I have to be on the gluten challenge or something? I didn't try going gluten free but I don't eat foods with gluten daily either. I just keep having these problems and I wanna pinpoint what causes it so I can treat it and get better. :/

[kareng]

Oh, SLE is just another name for the autoimmune disease, lupus.

 

Would I have to be on the gluten challenge or something? I didn't try going gluten free but I don't eat foods with gluten daily either. I just keep having these problems and I wanna pinpoint what causes it so I can treat it and get better. :/

 

Aren't some of these symptoms from your lupus?

 

Yes. You have to eat gluten to get an accurate test.

[SLEteen]

Aren't some of these symptoms from your lupus?

 

Yes. You have to eat gluten to get an accurate test.

 

 

Yes, they are. I feel like my doc isn't very attentive when I visit him for my routine checks because every time I go, my blood tests are "good" and that's it, I can go. I never know what that means but I know I'm in remission and have been for very long + there are no flares/inflammation, etc. The symptoms like fever, chills, or rashes are only present when I have active lupus i.e. a flare. My doc looks at my hands/arms and feet but has never noticed the pigmentation left by the faded rashes. He usually just makes comments about my weight like how fat I am or how much weight I have to lose to reach what he deems the "perfect weight" for me.

 

 

I just came here to see if I should be worried, especially with the bloating, and look into getting a test done, or at least check if I have some sort of sensitivity to gluten. No doubt I could have other issues, but right now all I can do is check them one by one and rule them out if possible.

[cyclinglady]

I would think about testing as autoimmune disorders seem to run together. My grandmother had lupus, RA, diabetes, and a non-functioning gallbladder. We suspect that she had celiac disease based on my diagnosis along with my aunt and cousin. I have Hashi's thyroiditis, celiac disease, and diabetes.

You have to be eating gluten daily for up to 8 weeks for the blood test. I forget the ecact protocol but here is a link to the U of Chicago, a leading researcher in celiac disease:

Open Original Shared Link

It would not hurt to get screened. At least it would rule out celiac disease.

[frieze]

SLE= systemic lupus erythematosus.

[nvsmom]

I agree that you might as well get tested.  Those symptoms could be celiac disease (or SLE or hypothyroidism).  As the others said, do not go gluten-free until testing is complete.

 

Get as many tests done as possible; like SLE testing, celiac disease tests can miss (up to 25% of) celiacs. These are the tests to ask for:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

total serum IgA (control test)

EMA IgA

AGA IgA and AGA IgG - old and less reliable anti-gliadin antibodies tests that have been replaced by the newer deaminated gliadin peptide (DGP) tests

endoscopic biopsy

dermatitis herpetiformis (beside the) rash biopsy

 

I have celiac disease and hashimoto's, and I was pretty convinved that I had SLE because of symptoms (butterfly-like rash, mouth ulcers, periodic severe arthritis, fatigue, positive ANA) that continued months into the gluten-free diet.  The rheumy believes it was just my celiac disease, and I am now fairly confident that she was correct because my symptoms have become less frequent and severe over the 2.5 years that I've been gluten-free, although they have not completely gone.  SLE and celiac disease symptoms do overlap. but if you suspect a problem, get tested.

 

...Perhaps get tested for hypothyroidism while you are at it.  My chicken knees disappeared after my hypothyroidism was finally correctly treated. The TSH, free T4 and free T3, and TPO Ab are a good place to start.

 

Best wishes.  

[SLEteen]

Thanks guys for the input! I'll definitely look into getting tested soon!

 

And @nvsmom funny thing is, I've never gotten the characteristic butterfly or malar rash for lupus. No mouth ulcers either unless I bit myself accidentally. Hypothyroidism is also one of the conditions I suspected, and will get it checked too!

[nvsmom]

And @nvsmom funny thing is, I've never gotten the characteristic butterfly or malar rash for lupus. No mouth ulcers either unless I bit myself accidentally. Hypothyroidism is also one of the conditions I suspected, and will get it checked too!

 

My butterfly-like rash may just be due to rosacea, but I'm not sure.... I just know my nose goes red if I drink.  LOL  The mouth ulcers come and go, but they do tend to show up when I'm not at my best - also symptoms of celiac disease and possibly hashi's.  I had symptoms of SLE but my (SLE) labs came back normal and that's why I was dismissed. I'm assuming you had some positives?  That's a tough disease....

 

Good luck with the thyroid check.  Make sure they test for the free T's and not just total T4, total, T3, T3, or T4. Those just won't tell you enough.

 

For those with thyroid problems, these lab results will generally result in feeling their best:

TSH - should be close to a 1 (or even lower if they take T3 medications)

Free T4 and free T3 - should be in the 50-75% range of your lab's normal reference range.  FT3 is probably the most useful test out there.

TPO Ab - should be pretty low

 

Good luck.  

[LauraTX]

SLE, or Systemic lupus erythematosus, is an autoimmune disease just like Celiac is, and they tend to run in groups.  If you were properly diagnosed with lupus, then you will always have it, but that doesn't mean you can't also have Celiac disease.  With symptoms you describe, it can be difficult to tell what is causing what, but to at least answer one question... yes, what you describe is constipation.  Ask any of your doctors for a referral to a gastroenterologist, so you can be tested.  You will need to be consuming gluten for the tests to be accurate.

 

Also, even though you see your rheumatologist for your lupus doesn't mean you should skip out on checkups at your primary care doctor.  Go see that doctor as well, and get that thyroid checked since you suspect something is going on.

 

I know it may not make sense to go to a GI doctor for an autoimmune issue, but in this case they diagnose because they need to do an endoscopy if Celiac is suspected.  I have Lupus (SLE) and Celiac disease, and actually found out about both around the same time, but from different doctors.  If you do end up having both, it is extra important to your overall health to properly manage both diseases.  Let us know how your appointments go, and don't hesitate to directly ask for tests if your doctor is not doing them.

[SLEteen]

I'm gonna have to assume I have some positives. I don't really know how they test for SLE or what conditions I have to meet to be diagnosed with SLE. I was too young back then to know what was going on. Maybe next time I see my rheumatologist I can ask him.

 

My next appointment is in April, so I might have to try bringing it forward. But that'll give me some time to make sure I eat gluten everyday for a long enough period so the tests are accurate. Seems like this is gonna take a while but I'd rather be accurate.

 

I'd need to see a GP/family doctor who can refer me to someone or a specialist to get my thyroid checked. I don't know about you guys, but getting general routine check ups isn't practiced widely in my country, not at least for younger people (from teens to those in their twenties).

[cyclinglady]

A GP can easily order a celiac or thyroid panel. Be sure to ask for thyroid antibodies, they might be out of range, but your other thyroid results (TSH, etc.) can be normal. That is how I first presented with Hashi's. You can decide then if adding thyroid replacement might help you. Then you could ask for referrals if needed.

[SLEteen]

Quick question, guys - is it possible for me to cheat on the challenge a bit? Like instead of eating just 1-2 slices of bread daily, can I eat 4 slices and cut the challenge duration by half? I'm still having gluten daily but feel absolutely horrible sometimes. Would much rather feel really bad over a shorter time period than feel moderately bad and prolong it. 

 

Any thoughts on this?

[littleburgy]

I'm on the challenge right now. I'm pretty sure the consensus is it's about length of time that gluten is in the diet and how much is eaten can't shorten it. Some people like to load up on the gluten as a "send off" but that can cause problems for others.

 

I've discovered very recently that my laundry detergent was also aggrivating my skin, so just as I was starting to doubt I really had a gluten issue and went back on gluten for the challenge (because the doctor requested the test), my digestive system is letting me know loud and clear that it STILL doesn't like gluten after going back on it.

 

As I see it, if you suspect you have celiac disease, it should be looked into even if you have other health issues. Like other said, many autoimmune issues end up occuring together. Your stool issue sounds like constipation. Passing stool should not be strained or involve cuts or bleeding. I've had a history of something similar -- constipation and rock hard stools with occasional blood or hemmorhoids. Plus blood in the stool can also be from internal hemmorrhoids, common with constipation.

[SLEteen]

Hey guys, by the end of this week I would have completed 8 weeks of the gluten challenge and I wanted to get a referral for the blood testing but my doctor doesn't seem very willing to refer me to a specialist. He says that celiac in my country (at this point I realized I should have posted this in the international threads section) is very rare and he says he wouldn't worry about the symptoms.

 

A while ago I did the Imupro IgG test and found that I had a severe gluten intolerance. The ranges were:

Level 1 - mild allergy                from 7.5 μg/ml

Level 2 - moderate allergy        from 12.5 μg/ml

Level 3 - strong allergy             from 20 μg/ml

Level 4 - very strong allergy     from 50 μg/ml

 

I scored a 65.50 μg/ml for the gluten portion. This is the link to the test for more info: Open Original Shared Link

 

Would you guys suggest that I keep pestering him for a referral until he gives in? It also seems that GPs in my country are unable to order the panel for me. I'd have to get a referral to see a GI in a hospital. Private ones are available but much more expensive.

 

Another option I have is to order those home test kits that you can find online. If it shows a positive then he'd have to refer me and if not, then I might be able to rule out celiac depending on the accuracy of the tests.