Tough road...

[Midlifemama]

Howdy group. 

I was DX'd with fibro a few years ago, at the same time as osteoarthritis. The dr put me on Cymbalta, which is a depression medication. I'm not sad, I'm upset! I stopped that, though I do know it was for pain. I'm in my upper 40's, have several children, and continue to pay attention to aches, pains, and such. 

It seems that any type of abnormality comes in sessions: it appears, then leaves. With fibro, it seems that the "all over pain" will come at cycles of the moon (totally get that) and then when the weather turns. Fall seems to be the worst. Nothing was as bad than during first onset, when I could barely get up the stairs nor sleep. 

I live with daily pain, but like many with an autoimmune I just learned to live with it. I'm highly motivated by responsibility. That makes keeping my house clean or finishing my computer based work challenging at some times. 

The "newer" symptoms is what brings me here. I'll them. I'm hoping that "already DX'd and living the dream" people can chime in, rather than just an echo chamber of others like me.

Symptoms:
my hands and feet began to ache; not like arthritis pain, though my arthritis pain is mostly in low back, knees, hips; it was in my shoulders and elbows but that comes and goes. The pain my my feet and hands was so odd. I have had plantar fasciitis (really, who hasn't?), but the pain was not that. It was bottoms AND tops of feet AND toes and toe joints. Not ankles; not wrists.

I started to have a general sense of malaise. I'm not like that. I have something else called PCOS, so erm once a month ish I would get a little depressed, but I power through with anger. That's my go to salvation emotions. It's just that I wanted to lay down a lot...which doesn't help the sense of responsibility and motivation to complete tasks (see above).

 

I poop. A lot. This reminds me of my last kid who ended up pooping 8x a day, and when we moved him to almond milk the excessive poop ended and he was back to his normal. Well, I'm not at 8x a day, but almost. It's not one type, either. I have hard, soft, ploppers...nothing looks too mucusy or watery at all. I'm not losing weight, either. I mean, if I'm going to drop kids off at the pool all day long I would expect to lose some weight. Nothing. 

And then I started to notice that not only do I have the poo issue, but I have more than normal upper GI pain. I live with daily pain, and don't tell people. Do you know what I mean? I don't grimace or ask for help or try to get sympathy. My husband knows and he knows I don't complain about it, unless it gets really bad, and then my complaints are more anger that I can't get my to do list done than a call to settle in. 

And of course I know that if I sit too long, I get MORE sore...that may be the fibro or the arthritis. I have no idea.

 

It's just...at this age, I don't want to feel this way. I wanted to get out of doors more not less. I need to be active for myself and my health and my kids. I do need to lose weight, too (thank you, PCOS). SO....is this just something to live with, or is this in any way some combination of symptoms for celiac? 

I'm just searching for answers....

My dad died when he was 69 and that's just 21 years from now...

[trents]

Certainly could be Celiac Disease or maybe gluten intolerance/sensitivity. But there very well may be other medical problems as well. Ask your doctor to test you for Celiac Disease. There are antibody blood tests for this that fall a little short of 100% definitive but it's the place to start. If the blood tests are positive for celiac disease then the next step is usually an endoscopy and biopsy of the small bowel, which is the gold standard for Dx Celiac Disease. In the meantime, don't start eating gluten free or you will invalidate the testing.

[Scott Adams]

If your doctor won't run the CD tests for you there are inexpensive mail order test kits widely available as well. Certainly your symptoms sound consistent with gluten sensitivity or CD, but to be sure you'd need to be tested. 

[Midlifemama]

Yeah. I forgot to mention, too, that my stomach gurgles all the time whereas before it didn’t. I also have had unexplained weight gain over the last 6 months. I’ve been on MFP for a very long time and have not changed my eating habits. I eat roughly the same types of foods and calories and work out about the same. When it’s a rough pain day I’ll try to at least walk for 30 minutes and will often feel better after. 

[Midlifemama]

2 hours ago, Scott Adams said:

If your doctor won't run the celiac disease tests for you there are inexpensive mail order test kits widely available as well. Certainly your symptoms sound consistent with gluten sensitivity or celiac disease, but to be sure you'd need to be tested. 

Oh. I might try that. I stopped seeing the rheumatologist because he just wanted to throw drugs at everything. I see an endocrinologist for the PCOS but whenever I mention anything sans weight she tells me to see my dr. Lol! She has allowed me to try a few weight loss options with her but none have worked. For example, I used Contrave. I also tried a weight loss med that has a percentage of phentermine. I lost 10. It has come back. 
 

Where might I find a test like that?  If I take one and it’s positive I could take that to my primary doc, though he’d probably tell me to see X specialist. I can self refer. LOL...the merry go round of medical care. Oye. 
 

thanks! 

[Scott Adams]

This company has one, but I'm not sure if they ship where you are: https://www.imaware.health/

[trents]

Why not just get your PCP to order the tests?

[cyclinglady]

Any PCP can run the celiac disease antibodies tests.  But go in armed with your symptoms and print off the celiac disease antibodies tests.   Most older doctors think of the classic textbook celiac disease cases  of malnourished children who survived on bananas.  You can be overweight, elderly, have constipation, another autoimmune disorder — the symptom list is endless.  Share that information with him or her.  
 

It can be hard to lose weight with PCOS.  It can be hard as you age.  i assume you have tried intermittent fasting or a low carb, high fat diet?  Both help me in managing my insulin resistance/blood glucose and it keeps the weight off for me after going through menopause.  I would worry about the serious side effects of diet medications.  Could they have contributed to any of your new symptoms?  The list is extensive:

https://www.webmd.com/drugs/2/drug-166975/contrave-oral/details/list-sideeffects

I am sorry about your fibromyalgia.  My mother has it.  Like me,  She was just diagnosed with her third autoimmune disease at age 80!  While my mother never had GI issues, I understand it is common when you have Fibromyalgia.  It certainly would not hurt to get tested for celiac disease.  For all you know, it could be the root cause of all your problems, including the fibromyalgia.  I know I was certainly diagnosed late in life and didn’t not even have any GI problems at the time (just anemia).  

Edited October 2, 2020 by cyclinglady

[RMJ]

Here is a company where you can order tests online, then go into an associated lab for the blood draw. They operate in most states in the US.  Looking at the sample report, it is the full celiac panel.

Celiac antibody panel

[GFinDC]

Hi Midlifemama,

I agree that getting the celiac testing done first is important.  The celiac antibodies testing is a simple blood draw and doesn't take long.  Generally the tests results are ready in a week or 2.  The second part of testing is an endoscopy to take 4 to 6 biopsy samples of the small intestine.  They check those biopsies for damage characteristic of celiac disease.  All celiac disease testing depends on being actively eating a gluten containing diet for several months prior to testing.

People with celiac disease tend to have something called leaky gut.  That can cause us to develop reactions to various foods besides gluten.  The gluten problem grains are wheat, rye and barley.  But we can become sensitized to other foods as well because of leaky gut.

I avoid nightshade vegetables because they cause me joint pain.  Soy is another problem food for me.  There is a list of 8 top food allergens in the USA but in Europe they have 10 top food allergens.  Regardless of your celiac disease test results, an elimination diet may be helpful for you.  If you are eating a food that causes irritation or problems in your body but don't know it, an elimination diet is the way to find out.