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Should I Get Tested?

Bree-cda

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Bree-cda Newbie
Bree-cda
Posted

I am a 55 year old female who has been falling apart over the last few years. I have always taken care of myself and have been generally in good health and active my whole life. Up until earlier this year when I had a bad rotator cuff tear I worked out almost every day. I've had chronic sinus issues for many years and always thought I had allergies but when I got worse a few years ago I went to an allergist and tested negative for all the basics like dust, pollen etc. About that time I started having trouble swallowing and had constant phlegm at the back of my throat. I thought it was from my sinuses so went to an ENT who advised I had sinusitis and LPR (silent reflux) .....I didn't have any heartburn. In the meantime I've been going to the doctor with weird (terrible) muscle cramps...they advised I was Vit D deficient but I live in Canada so this isn't uncommon. I've also had problems with my tendons (torn my rotator cuff, plantar fasciitis), osteoarthritis, and recently I've had terrible aching feet and weird vision problems. I also developed sensitive teeth.....i thought perhaps acid was eroding the enamel but my dentist said its ok. I have periodic tingling and limbs going to sleep but thought this was from cervical oestoarthtitis. A recent endoscope showed grade 2 esophigitis so the GI put me back on PPIs with a follow up scope and colonoscopy (he feels I have IBS too) in 2 months. He said that if my esophagus doesn't heal on PPIs in that time that the inflammation could be caused by something other than reflux (like food intolerance and mentioned that celiac disease has also been tied to esophagitis).

I thought a lot of my problems were due to menopause but since researching I'm wondering if they aren't all tied to food intolerance or celiac. Some things don't add though... I have gained weight (not lost), not a lot of abdominal pain etc so that doesn't seem to fall in line with celiac disease so I'm not sure.

I've gone to the doctor more in the last 2 years than I have my entire life but can't help thinking all my symptoms are tied together......do my symptoms warrant insisting on being tested for celiac disease

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

Welcome to the forum... and I'm so sorry that your body has started to betray you.  It sounds to me like all of your symptoms could be related to Celiac... which I must add, doesn't say a whole lot because it seems that just about anything and everything *could* be related to Celiac.  Don't discount Celiac just because you don't have the "typical" abdominal/digestive issues.  I myself was completely symptom-free.  In my opinion, a full Celiac panel bloodtest would be a very reasonable thing to insist on with your doctor.  Make sure you are eating gluten regularly though, or the test is useless.  Also, once they do the bloodtest, insist on getting a copy of the results - don't accept a "negative" result without seeing the results for yourself.  Sometimes the numbers may be within what your doctor/lab consider negative, but they still indicate a problem.  (Interpreting the results is subjective.)

 

If the bloodtest comes back positive, they will most likely want to do an endoscopy of the small intestine and take a biopsy to confirm Celiac - and to exclude other potential problems.  So make sure not to go gluten-free even if you do get a positive bloodtest, until after you've had the biopsy.

 

Good luck!

GF Lover Rising Star
GF Lover
Posted

Cooties, 

 

I'm wondering why you said "Interpreting the results are subjective"  Is it because of a possible Iga deficiency? Or do you have other reasons in mind?  

 

Colleen

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Cooties, 

 

I'm wondering why you said "Interpreting the results are subjective"  Is it because of a possible Iga deficiency? Or do you have other reasons in mind?  

 

Colleen

 

Well... because what the "normal" is differs from lab to lab and because some doctors may consider a "weak positive" to be nothing to worry about while another doctor may consider a "high negative" to still be worth investigating further.  I just think there are so many potential variables in the diagnosis that different doctors interpret "borderline" results differently.

That said... if your lab considers anything over 10 to be positive and you get back a tissue number of something like 80 I doubt there would be much subjectivity in declaring that to be a positive result.  :)

GF Lover Rising Star
GF Lover
Posted

Cooties, thank you for clarifying your opinion on this  :)

 

Colleen

nvsmom Community Regular
nvsmom
Posted

You do have many celiac symptoms, and gaining weight as opposed to losing, is a symptom too.... I can attest to that. LOL make sure you keep eating gluten until your testing is done because going gluten-free early can cause false negative results.

Welcome to the board.

Bree-cda Newbie
Bree-cda
Posted
  • Author

Thank you for your replies. Not that I want celiac disease but it sure would answer a lot of questions and therefore I would know how to move forward. Even if it was borderline I think I'd go off gluten.

Something that confuses me is the role between acid reflux and celiac disease. Does cities in deficiency weaken the spincter causing reflux and esophagitis or is the inflammation different. Does it go away eventually on a gluten free diet or will you have to stay on meds or watch your diet for acid etc

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nvsmom Community Regular
nvsmom
Posted

For some the reflux improves after going free, for others it is unrelated... Perhaps start a new thread addressing those questions. It may attract the attention of those who have experience with it. I don't know much.

Best wishes.

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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