Afraid Things Getting Worse

[trayne91]

Well, I've been gluten-free since May 2013 now.  I thought I was getting better.  Basically, yeast infections slowed down, migraines gone.  Get a headache once in a while, but nothing an aspirin can't fix.  Ankle swelling, tingling and cramps gone, anxiety down, as well as a load of other horrible problems.  Oh, and dropped like 30 pounds sitting on my butt eating chips LOL.  

 

About 6 weeks ago things started to take a turn.  Normally if I accidentally ingest gluten, which I do sometimes because I still don't think about things on accident or whatever the case may be, all symptoms back - headache, the runs, cramps, anxiety, irritable, swollen abdomen, for about 10 days and back to normal.  Well, I started having a stomach ache, then a little burning, some nausea.  My skins was itching like crazy around my belly button and I started getting some "sore" spots.  The inside of the right knee is sooo sore I can barely touch it.  Well, after 2 weeks, it got really bad.  My abdomen blew up pre-diagnosis size - looks like having twins - so swollen - my lymph nodes were swollen to size of marbles and pinching the heck out of me every time I moved.  I cried it hurt so bad finally and hubby made me go to ER.  They were a big disappointment.  Ran tests and sent me home and told me to take tylenol.  Looked at me like I was crazy when giving my symptoms and kept asking when I went to the bathroom last.  It was horrible.  I seen my gyno the next day for the yeast which I had back since this all blew up.  She couldn't find my ovaries I was so swollen.  She touched my chest and I about screamed, which I did earlier this year at the Dr. office, too, in about June or so.  (I went for chest pain).  She, my gyno, also has Celiac and referred me to a rheumatologist. 

 

I had to wait 4 weeks to get in to see the rheumatologist and my GI.  Got both appts. on the same day, which I had yesterday.  I am still a bit swollen since the ER visit and my nodules or nodes are still swollen, but about pea sizes, but still hurt and pinch (6 weeks later).  I have to couch it.  If I do too much, I'm down with pain there.  Rheumatologist didn't know much about Celiac except that it is a bowel disease, so I had to explain the wide array of symptoms associated and I don't know if he believed me.  He did touch me all over and it was sooo painful.  My back, chest, thighs, shoulders, legs, everywhere hurts sooo bad that you can't even touch me.  It was horrible.  He beat me up just pressing on me.  He rubbed over one nodule in my belly still and it was super sore I could have cried, just like the pain I felt when he just only pressed on my thigh.  He said he was running an inflammation test and Lupus test, but didn't expect I have that, but wanted to see what they show anyway.  I can't even cross my ankles because my leg hurts the other one!  

 

Left and went to GI.  He didn't exam me much, Small, belly rub and said he was doing blood work - my Celiac panel and inflammation again - I believe - and scheduled me for a small bowel follow-through, I think it is called - which I have Monday.

 

So far I only have my Sed Rate test back.  Before gluten-free last year, my Sed Rate was 25.  Yesterday My Sed Rates were 31 in the morning at the rheumatologist office and 29 in the afternoon at the GI clinic.

 

It's been a long time since I post here or had time to post here.  Couching it today.  I'm just so sore and so tired of hurting.  It's been 6 weeks. I don't know what's going on.  I just know it hurts and I just can't take it anymore.  It's been a real painful long month and a half.  Aww, and today's our anniversary and I can't even barely move.  Just needed to tell someone and vent a bit.  Neither Dr. has called.  I read test results so far online.  Anyone have anything similar?  I'm afraid I thought I found my problem, Celiac, and a cure, gluten-free diet, and now it's just getting worse because, of course, that can't be all that's wrong with me - again.  

[shadowicewolf]

Have you tried removing possible food intolerences? Dairy, Soy, and nightshades are some of the intolerences i see on this site.

 

Keep a food diary, it will help track down any possible food issues.

[bartfull]

I notice your sig line says gluten-free 5/12, but your post says 5/13. I'm assuming the 13 was a mistake and you have actually been gluten-free since your diagnosis in 2012?

 

But I also notice you also say, "Normally if I accidentally ingest gluten, which I do sometimes because I still don't think about things on accident or whatever the case may be, all symptoms back - headache, the runs, cramps, anxiety, irritable, swollen abdomen, for about 10 days and back to normal."

 

It sounds like you have been getting "accidentally" glutened on a regular basis. If that is the case, you are still doing damage and thus have not healed. Your symptoms will naturally get worse over time. I'm not saying that ALL your current symptoms are gluten related, but they might be. Once the doctors have cleared you of all these other possibilities, it's time to get strict with yourself so you don't keep suffering like this.

[trayne91]

Have you tried removing possible food intolerences? Dairy, Soy, and nightshades are some of the intolerences i see on this site.

 

Keep a food diary, it will help track down any possible food issues.

Have only removed dairy and it didn't make any difference.  I did not try soy.  I don't know what nightshades are.

[trayne91]

I notice your sig line says gluten-free 5/12, but your post says 5/13. I'm assuming the 13 was a mistake and you have actually been gluten-free since your diagnosis in 2012?

 

But I also notice you also say, "Normally if I accidentally ingest gluten, which I do sometimes because I still don't think about things on accident or whatever the case may be, all symptoms back - headache, the runs, cramps, anxiety, irritable, swollen abdomen, for about 10 days and back to normal."

 

It sounds like you have been getting "accidentally" glutened on a regular basis. If that is the case, you are still doing damage and thus have not healed. Your symptoms will naturally get worse over time. I'm not saying that ALL your current symptoms are gluten related, but they might be. Once the doctors have cleared you of all these other possibilities, it's time to get strict with yourself so you don't keep suffering like this.

 

Yes, I've been gluten free since 5/12.

Accidental gluten ingestion is not something I do on a daily basis or try to do. I am strict as all heck.  I have changed my soap, shampoo, toothpaste, foods, vitamins, etc.  I guess to me "sometimes" means, I've accidentally gotten bit by the gluten bug by something once in a great while over the course of the last 1.5 years.  A lot initially as I was brand new and made my mistakes.  Then, I made more eliminations and restrictions so that I don't even walk down the bread isle at the store.  And I quit wearing make-up.   I do know when I do ingest, what the symptoms are like and how long they last.  Saying it's not typical for me to be in so much pain and different pain for over 6 weeks. I can't even turn over in bed without wincing.  The tender spots all over my body are just crazy.  Totally agree -I also do notice the more I'm gluten-free, the worse symptoms are when you get them.  I tried explaining that to the rheumatologist yesterday.  I totally get what you're trying to say, though.

[bartfull]

Nightshades are tomatoes, potatoes, peppers and eggplant. They are known in many folks to induce joint pain. It sounds like your pain isn't just in the joints, but it couldn't hurt to give them up for a while.

[trayne91]

Nightshades are tomatoes, potatoes, peppers and eggplant. They are known in many folks to induce joint pain. It sounds like your pain isn't just in the joints, but it couldn't hurt to give them up for a while.

Sure.  I'll get through Monday and try cutting some things out of my diet and see if it helps.

[trayne91]

Just an update that I do not feel any better.  I  had the small bowel follow through which was normal.  Said they didn't see anything.  My ANA test was normal.  My CRP Rate was normal.  It used to be high so that is good.  My Celiac Panel was in normal range, both IGA and IGG.  Woohoo!  As stated previously, my Sed Rate was high both times taken.  That's the only thing abnormal so far.  

 

The rheumatologist ended up with the flu and had to cancel.  I rescheduled and he was still sick with the flu.  I then just went in to see my GP because I was in so much pain that I could not wait.  My GP looks at my labs and did a tender test on me again poking me everywhere and diagnosed me with fibromyalgia.  I was given Cymbalta, but I couldn't take it.  It really weirded me out.  My pupils dilated like an alien and I was knocked out within 2 hours of taking it for 8 hours, slept the night, and then back to a nap when I woke up again - among some other symptoms.  I was then given Gabapentin, but I stopped taking that now, too.  It does seem to help with the pain some for the few days I took it - toward the end anyway, but it seems to bring me down into the dumps.  Makes me feel really not like myself, again, and wanting to be impatient and pull my hair and cry and mopey - just depressed, so I stopped it.  I did some research and went to Walgreens and got myself some Sam-e, Magnesium, Garlic, to couple with the multi-vitamin I already take with 1000 IU of D3 to keep my vitamin D up, plus the probiotic I take.  I seem to be doing ok on this so far.  It's not the best and I'm still in a lot of pain, but at least I have my head about me.  I read I would need 800mg a day and I'm only at 400mg starting, we we'll see.  

 

Right now I am battling a severe stomach upset for the last 2 days.  I don't know if it's something I ate, got a bug, or the Sam-e doesn't agree with me and I have to go back to the drawing board.  At any rate, I'm trying to get through it.  Hope I don't need to call the Dr. back.

 

My biggest concern right now is just the Sed Rate being high for almost 2 years now and fibro doesn't show an elevated sed rate.  My GP said I wouldn't have to go back to the rheumotologist now, but I'm wondering if I really need to in order to find out what the cause of that inflammation is and to get it treated as I feel masking the pain doesn't really resolve the underlying issue.  GP said I could have inflammation anywhere in the body because of all my issues.  Not sure what to do.  Keep trying different meds or go back to the rheumy...

[MGR]

Well, I've been gluten-free since May 2013 now.  I thought I was getting better.  Basically, yeast infections slowed down, migraines gone.  Get a headache once in a while, but nothing an aspirin can't fix.  Ankle swelling, tingling and cramps gone, anxiety down, as well as a load of other horrible problems.  Oh, and dropped like 30 pounds sitting on my butt eating chips LOL.  

 

About 6 weeks ago things started to take a turn.  Normally if I accidentally ingest gluten, which I do sometimes because I still don't think about things on accident or whatever the case may be, all symptoms back - headache, the runs, cramps, anxiety, irritable, swollen abdomen, for about 10 days and back to normal.  Well, I started having a stomach ache, then a little burning, some nausea.  My skins was itching like crazy around my belly button and I started getting some "sore" spots.  The inside of the right knee is sooo sore I can barely touch it.  Well, after 2 weeks, it got really bad.  My abdomen blew up pre-diagnosis size - looks like having twins - so swollen - my lymph nodes were swollen to size of marbles and pinching the heck out of me every time I moved.  I cried it hurt so bad finally and hubby made me go to ER.  They were a big disappointment.  Ran tests and sent me home and told me to take tylenol.  Looked at me like I was crazy when giving my symptoms and kept asking when I went to the bathroom last.  It was horrible.  I seen my gyno the next day for the yeast which I had back since this all blew up.  She couldn't find my ovaries I was so swollen.  She touched my chest and I about screamed, which I did earlier this year at the Dr. office, too, in about June or so.  (I went for chest pain).  She, my gyno, also has Celiac and referred me to a rheumatologist. 

 

I had to wait 4 weeks to get in to see the rheumatologist and my GI.  Got both appts. on the same day, which I had yesterday.  I am still a bit swollen since the ER visit and my nodules or nodes are still swollen, but about pea sizes, but still hurt and pinch (6 weeks later).  I have to couch it.  If I do too much, I'm down with pain there.  Rheumatologist didn't know much about Celiac except that it is a bowel disease, so I had to explain the wide array of symptoms associated and I don't know if he believed me.  He did touch me all over and it was sooo painful.  My back, chest, thighs, shoulders, legs, everywhere hurts sooo bad that you can't even touch me.  It was horrible.  He beat me up just pressing on me.  He rubbed over one nodule in my belly still and it was super sore I could have cried, just like the pain I felt when he just only pressed on my thigh.  He said he was running an inflammation test and Lupus test, but didn't expect I have that, but wanted to see what they show anyway.  I can't even cross my ankles because my leg hurts the other one!  

 

Left and went to GI.  He didn't exam me much, Small, belly rub and said he was doing blood work - my Celiac panel and inflammation again - I believe - and scheduled me for a small bowel follow-through, I think it is called - which I have Monday.

 

So far I only have my Sed Rate test back.  Before gluten-free last year, my Sed Rate was 25.  Yesterday My Sed Rates were 31 in the morning at the rheumatologist office and 29 in the afternoon at the GI clinic.

 

It's been a long time since I post here or had time to post here.  Couching it today.  I'm just so sore and so tired of hurting.  It's been 6 weeks. I don't know what's going on.  I just know it hurts and I just can't take it anymore.  It's been a real painful long month and a half.  Aww, and today's our anniversary and I can't even barely move.  Just needed to tell someone and vent a bit.  Neither Dr. has called.  I read test results so far online.  Anyone have anything similar?  I'm afraid I thought I found my problem, Celiac, and a cure, gluten-free diet, and now it's just getting worse because, of course, that can't be all that's wrong with me - again.  

Poor thing- I had a horrendous reaction to Gluten when I had to introduce it as part of my challenge- I haven't been so Ill constantly for years... I really hope you have some resolution- you might just have been glutened without knowing it...

[MGR]

Oh no, I am so sorry to hear you are not better yet.. Hang I there!!

[GFinDC]

Hi Tracey,

 

I don't know what the trouble is, but if it is a food related reaction, you should be able to determine that by self testing.  If you eliminate any possibility of a food related issue, then it is something else, so that is worth knowing also.  So how to figure it out?  Easy enough really.  You take a your diet down to a very minimum number of items and see what happens.  Say 5 different foods.  Also eliminate all vitamins, spices, meds and drinks other than plain water.  For your 5 foods choose things you don't regularly eat much.  You can prepare and combine those 5 foods anyway you like, and eat as much of them as you like too.  The idea is not to lose weight, but to simplify the diet and see if there is an improvement from removing foods.  I can't tell you for sure what 5 safe foods are for you, that's something each person has to identify.  Some people suggest lamb as protein as it is not eaten frequently by most people.  Some vegetables like sweet potatoes, peas, onions, and salt might be a good list.  But it depends if those are things you don't eat a lot.  Salt is most likely not a problem.  If you get through a week and there is no change, then it may be a non-food issue.  You could double verify by swapping out the meat and vegetables with different meat and vegetables.  Now again, this is assuming you aren't taking in anything else that could possibly cause a reaction, like vitamin pills, meds, coffee, tea, soda, alcohol etc.

 

This may seem like a boring way to test your diet, but it works if you are patient.  If you have success then you add one new food into the diet every 3 to 4 days.  Eventually you have a pretty broad diet again.  Don't rush the process of adding foods back in, add only one new food at a time.  That's the fastest way to figure things out.  Adding in 2 new foods in a day just confuses things cause if you have a reaction you don't know which food caused it.

 

Nightshades are peppers (not black pepper tho), tomatoes, white potatoes, and eggplant.  Soy, eggs, nuts, corn, rice, and many other foods can cause reactions.  If you do a search on the top 8 food allergens you can find lists that can at least give you ideas of possible problem foods.

 

You can also ask your doctor to test you for vitamin and mineral deficiencies.  That way you know if you are low on something and need to supplement it.  I believe it is generally safer to take vitamins that are not the kitchen sink variety, but more single vitamin pills.  Combos of 2 or 3 vitamins are more ok.  The big kitchen sink fix everything type can be a problem sometimes.  At least they were for me.

 

[1desperateladysaved]

I get sick when I eat garlic.  You may want to consider if the garlic supplement is causing problems.