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Here Are My Symptoms... What Do You Think?


angelcots

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angelcots Newbie

Hello All! ...Can't say I'm happy to be here.

 

First off, I was tested for celiac over a year ago and it came out negative. The doctor told me that studies showed that people with IBS or PCOS tended to do better when they removed gluten from their diets... so that could explain some of my concerns. Of course I did not stop eating gluten because...why would I?

 

Fast forward to this month. While I have had a few unexplained sore throats this year... OH MY GOD! The first week of this month it felt like my throat was on freaking fire! It didn't even matter how many pain killers I took! I took off from work. I couldn't sleep. When I finally did drift off once, I quickly woke back up choking. There were other symptoms... not that I can accurately recall them now... but let's just say I felt like complete crap and was in total pain. After a full week, I felt much better but I never really felt like I completely healed from that week.

 

This past Monday, I went out to eat at lunch with coworkers. I got a wheat club sandwich. (BTW, about a year and a half ago... I tried the paleo diet for a few weeks. I felt amazing... but didn't stick with it. I became a vegetarian instead. lol! However, as soon as I went back to eating carbs/bread/gluten, I realized that I would cough after eating it every time without fail. I also felt really tired again. That lead to me being tested for celiac which was negative.) Anyway... That night after having the wheat sandwich, I was snacking and feeling great. I ate a few cookies... and it hit me all at once. My throat was on fire again! What the hell?! I knew it wasn't a coincidence. There was no way! Something was definitely causing this! So I wondered... What else has bothered my throat recently??? The sandwich! I coughed after eating it! That was when I did online research before vowing to go gluten free for a while... or at least until a preplanned road trip out of state next weekend. It's an experiment to see if I could be gluten sensitive. I'm completely desperate!

 

I feel like my throat has been better this time around. My lips are so great as of yesterday! My lips are always terribly chapped! But they are so soft and just wonderful right now! I don't think this is a coincidence because they are ALWAYS chapped no matter what I do. Some other symptoms I've experienced this week are night sweats, ear aches, headaches, neck pain, coughing, dizziness, insomnia, bad breath, nausea, and sore throat of course. I've actually been farting less... ugh... talk about TMI. I feel really good today... then again I did take two aleve this morning... and I still feel nauseous.

 

So... you all know more about all of this from experience. Do you think it's plausible that I have non-celiac gluten sensitivity or not? Let me know what you think. I really appreciate it! Thanks!


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etbtbfs Rookie
...

>So... you all know more about all of this from experience. Do you think it's plausible that I have non-celiac gluten sensitivity or not? Let me know what >you think. I really appreciate it! Thanks!

 

 

 

Lab tests don't matter.  What really matters is your symptoms.  Those symptoms seem pretty clear: get off gluten!  BTW, do you know that most wheat these days is the transgenic dwarf variety, which has much more gluten (and toxicity) than the heirloom varieties?

nvsmom Community Regular

Welcome to the board, even though no one wants to be here.  ;)

 

My son was a mild asthmatic before going gluten-free.  His asthma appeared to have disappeared a few months after going gluten-free.  It could be developmental but it was still nice to see his cough go.

 

I haven't heard about throat pain as a symptom of celiac disease.  It could well be though - there are over 300 symptoms of celiac disease (and most of them apply to NCGS).  It almost sounds like an allergy. Could it be a wheat allergy?  (There is not an allergy to gluten.)

 

If you do think you have NCGS, you should be gluten-free.  A gluten sensitivity is an immune response, although it is not an autoimmune attack like celiac disease, and not handling that can lead to oher health problems.  NCGS is not a benign thing.  Irritaing the body will lead to inflammation which leads to possible futures health issues.  Going gluten-free is a good idea.

 

Before you go gluten-free, are you sure you were properly tested for celiac disease?  Celiac tests are not perfect and can miss 25% of celiacs.  Getting multiple tests run will help insure against that.

 

These are the tests:

  • tTG igA and tTG IgG
  • DGP IGA and DGP IgG
  • EMA IgA
  • total serum IgA (control test)
  • AGA IgA and AGA IgG - older and less reliable tests which were replaced by the DGP tests
  • endoscopic biopsy - 6+ samples taken

You need to be eating gluten in the 2-3 months prior to testing, so don't go gluten-free uness testing is done.

 

Best wishes.  Hope you feel better soon.

Olim2005 Newbie

The digestion starts in your mouth. It is very possible that celiac disease is causing GERD or some sort of acid reflux right after your ingest the food. Acid reflux isn't always a burning sensation, it can be scratchy throat or cough too.

 

I tested negitive for celiac...so I went back to eating gluten for about 6 months and everything fell apart. I was tired, clumsy, I would trip a lot, drop things a lot, headaches, ears ringing, really bad pain up and down my legs after eating gluten, painful periods/cramps. Lots of pain. Since I went gluten free I haven't had any symptoms! So the test doesn't matter if it makes me feel better.

sunny2012 Rookie

Eliminate the gluten, feel better, stick with it. Otherwise, see your doctor for further investigation.

sunny2012 Rookie

That should have said

Eliminate gluten = feel better, THEN stick with it; otherwise seek further professional advice from your doctor.

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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
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