fritz2

I just felt more poorly all of the time.  I did notice that on Sundays when we usually had pancakes for breakfast I felt worse but my mom blamed the eggs and milk so we switched to soy and quit using eggs.  (this was over 60 years ago).  The symptoms changed some, but I still didn't feel very good and the constipation diarrhea cycle didn't change much either.  No doctor ever suggested wheat issues and I had never heard of it.  After the head/neck cancer chemo and radiation 30 years ago, the RA like trouble with painful joints and entire area of my body inflamed to the touch, a doctor decided I had fibromyalgia and prescribed vicodin.  That was the only pain-killer that ever worked and allowed me to go to work again.  After my grandchilds diagnosis, I looked into celiac and wondered what-if?  I asked my doctor and he suggested I try eliminating all wheat for a few weeks.  Within 10 weeks my fibro was gone.  I still had the constipation issues.  And then they discovered I had Hashimoto's from the radiation.  Only on this website have I discovered there's an issue with it and celiac.  I'd like to know more about what this issue is.

I'd also like to know more about how to clear this damned swollen joint problem so I can get on with living.

My first post includes the blood test report done by the second doctor.  They told me to take two Naproxen tablets per day.  Absolutely worthless but I'm doing it.  I get to visit the doctor again in two weeks.  These doctors are worthless.  I had to clue them in to the fact that they used to treat me for fibromyalgia 15 years ago with vicodin until some political stooge had it removed from the market.  Then I found out about my grandchild with celiac so I removed gluten from my diet and got better.  (I had hashimoto's then and still do).  They don't read my medical record, or they don't comprehend it.  Either case they're worthless turds with no answers that are helpful.

So what relieves the joint pain?

Well, as much pain as gluten has caused in the past, there's no way in hell I'm taking gluten on purpose.  What is NCGS?  And are there any remedies to quickly get over the swollen joints?

My joints are swollen and hot to the touch and hurt.  For about two weeks they were too painful to even think about using them.  Six weeks later, I still can barely use my hands.  I struggle to get a bottle cap unscrewed they hurt so badly.  Edema in my legs and the knees hurt to walk.  And that was probably a minor exposure as the wheat was listed towards the end of the "contains" list in very fine print we couldn't read without a magnifying glass.

17 hours ago, trents said:

endomys is, aka, "EMA" and is a celiac disease antibody test. It was negative.

gliaiga is, aka, IGP-IGA, is also a celiac disease antibody test. It was negative.

TRANSGLUA is, aka, TTG-IGA, another celiac disease antibody test. It was in normal range.

tranigg is, aka, TTG-IGG, still another celiac disease antibody test. It was high, or above normal range.

immaqnt is, I believe, what is also known as "total IGA" and at 160, looks to be in normal range since it wasn't flagged otherwise. This is a test for IGA deficiency. If someone is IGA deficient then all other IGA test scores cannot be trusted as being accurate. You are not IGA deficient.

Here is a primer explaining the various tests that can be used to diagnose celiac disease:

Celiac disease blood antibody testing is not valid when someone has been gluten free or eating low gluten for a significant period of time. The IGA tests are more specific for celiac disease than are the IGG tests but your slightly high TTG-IGG test score could reflect that you have celiac disease and have had low level exposure to gluten over time or a recent exposure. You could also have NCGS (Non Celiac Gluten Sensitivity).

Thank you.  Is there a test that does not include consuming wheat that I can request my doctor to have done?  Also, is it a celiac reaction for me to blow up my joints with gout like symptoms?

2 hours ago, Scott Adams said:

@fritz2, in the USA it is extremely rare for maltodextrin to contain wheat, although technically, according to the FDA, it can. Various celiac support groups over the last few decades have contacted the 3-4 biggest USA manufacturers of it to discover that corn is almost always used, rather than wheat. The sugar in the vitamin water, however, may have contributed to your gut issues.

 

 

thank you, is it safe to eat links that contain sucrose and dextrin?  

I'm 70, had gut issues my whole life.  15 years ago my grandchild was diagnosed with celiac.  Since I had a constant either constipation or diarrhea and what the doctors thought was fibromyalgia and other issues I decided to see what happens if I quit gluten.  I got a lot better.  BTW, 30 years ago I had head & neck cancer, the radiation destroyed my thyroid.  I suffer from chronic fatigue and have to take synthroid.

A few months ago, I bought a bottle of Ice water, I was thirsty and all they had at the motel was this.  It said sugar free and had a bunch of vitamins.  I couldn't read the fine print so I thought it's safe, so I bought several bottles (it had sucralose and maltodextrin in it).  I thought one per day would be ok and it absolutely was delicious.  In the meantime, my wife found some links and bratwurst for breakfast, we didn't know it had wheat in it and we picked up a half gallon of her favorite ice cream and unknown to us they had changed the formula and added wheat.  I had several meals and several bottles before I realized something was wrong.  Did all the sugar add to the issue?  

In a day, I wasn't feeling well, my joints started swelling.  In a couple days, I thought sure I had gout in both hands.  In three days, I needed help to stand up or sit down, the pain was extreme.  I went to the emergency room.  They took blood and gave me cholchistine to alleviate the gout, it did nothing.  I didn't get a report on the test.  The next week the doctor ordered more blood tests and it's all acronyms but a couple items on celiac were listed as high.  The nurse I asked about the report had no clue and the RA was negative.  This has been ongoing for over a month and only now am I able to use my hands, but it's painful.

Under the Celiac labs headline it says: 

endomys-Negat

gliaiga-  5

gliaigg-  1

TRANGLUA -3

tranigg-  8  (high)

immaqnt-  160

Rheumatoid factor <12

Thyroid stimulating hormone: 2.81

Does anyone know what this means?