Overwhelmed by This Possibility

[GalaxyDuster]

7 hours ago, Michelle1234 said:

You are in horrible shape. I mean like really wrecking your body. Your digestive system is so messed up it doesn't know what to do with it self. That is why you don't react to individual foods or meals, you are reacting to everything. Likely the intestinal wall is completely destroyed so whatever you eat is going right through it whether it is gluten or not.  It will take you years to straighten this out. If it is gluten, stop poisoning yourself.

I have to admit, I have considered this possibility. It's like I can't digest *anything* properly. ...But I really want to know exactly what's been wrong with me, and I don't want to mess up the tests by starting a gluten free diet too soon. I don't want to be in a place months from now where I wonder what's really going on. I really, really want a straight-forward yes or no answer. I am going to keep pestering the doctor to try and speed this up. I have been suffering for so long, I just want my answers right now!!!

[squirmingitch]

3 hours ago, GalaxyDuster said:

I have to admit, I have considered this possibility. It's like I can't digest *anything* properly. ...But I really want to know exactly what's been wrong with me, and I don't want to mess up the tests by starting a gluten free diet too soon. I don't want to be in a place months from now where I wonder what's really going on. I really, really want a straight-forward yes or no answer. I am going to keep pestering the doctor to try and speed this up. I have been suffering for so long, I just want my answers right now!!!

Here's the thing too...... you have kids. Celiac is genetic. If you have it and get a bonafied dx, then it will be much, much easier to get your kids tested, not to mention other first degree family members.

[GalaxyDuster]

Yes, and my oldest daughter has all kinds of symptoms of being very sluggish and tired and exhausted and I have to say, if I turn out to have this disease, she's next on the list to be checked out for it!

[squirmingitch]

If you turn out to have celiac, then all first degree relatives should be tested every 2 years in the absence of symptoms & immediately if symptoms present.

[GalaxyDuster]

For the last couple of months, I've had intermittent periods of sweating and chills with increased aches around my back and sides. I'm also more tired. Even the skin is sensitive, like when you have the flu and even clothes or light touch "hurt". I've also thought about how I had those swollen lymph nodes on my MRI last year (the CT scan I had months later showed the lymph nodes to be normal sizes, however). It was from October 2015 (positive MRI) to January 2016 (the negative CT) that the changes occured. The finding was incidental, the MRI was for the back pain and they just happened to see "many enlarged retroperitoneal lymph nodes, up to 1.5 cm." Can any of these symptoms be associated? Wouldn't the lymph nodes stay inflamed if it was celiac disease? I feel blind here, I just don't know much about it, but I've been reading a lot and considering all the possibilities.

ETA: I had a weird IGE allergic process about 4 years ago where I got dermatographic itching and hives all over my body, my feet swelled up so bad I had to call into work and go on prednisone. They never figured out what caused it. I had an ESR drawn in October of 2015 (around the time of that MRI) and it was normal. I know it's non-specific, but if it is celiac disease, shouldn't the ESR be high all the time?

[Ennis-TX]

14 minutes ago, GalaxyDuster said:

For the last couple of months, I've had intermittent periods of sweating and chills with increased aches around my back and sides. I'm also more tired. Even the skin is sensitive, like when you have the flu and even clothes or light touch "hurt". I've also thought about how I had those swollen lymph nodes on my MRI last year (the CT scan I had months later showed the lymph nodes to be normal sizes, however). It was from October 2015 (positive MRI) to January 2016 (the negative CT) that the changes occured. The finding was incidental, the MRI was for the back pain and they just happened to see "many enlarged retroperitoneal lymph nodes, up to 1.5 cm." Can any of these symptoms be associated? Wouldn't the lymph nodes stay inflamed if it was celiac disease? I feel blind here, I just don't know much about it, but I've been reading a lot and considering all the possibilities.

Sweating and chills at night are a constant for me and have been for years. No real cause behind them, now my lymph nodes swell and tighten up in my neck as a first sign to gluten, and a few others have similar issues. Oddly enough this only happens with inhaled flour or eating something highly contaminated IE I need need to go home and get in bed with a 5 gallon bucket next to me....cause I will be sick and collapsing in the next 4 hours. not happened that bad in over 6 months. But we are all a tad different in our reactions. I know a few of us who get the eye twitch, gurgles, or the butterflies as a first sign. Others have no reaction at all til it hits the fan hour later or the next day.

As to the clothes hurt and touch pain....might be a nerve related deficiency as in magnesium or B vitamins, when I am low on magnesium my skin gets hot needles feeling, hurts to touch, and become very sensitive to heat and touch on my back. and upper arms

[squirmingitch]

I had hot flashes like going through menopause. I had swollen lymphs but I can't say they came & went. I could both see & feel mine in my groin area. They went for good after being gluten free for a while.

[GalaxyDuster]

I just got a call from my new doctor's office. They said my vitamin D is still quite low, and magnesium is quite low. Everything else (even RBCs and iron, they said) were normal. They agreed to send me a script to have those antibody panels done. But now I'm wondering, shouldn't I still be anemic and have low iron, if celiac disease is my answer? I feel like I'm going crazy. I wish this idea had never even been put into my head.

[Ennis-TX]

1 minute ago, GalaxyDuster said:

I just got a call from my new doctor's office. They said my vitamin D is still quite low, and magnesium is quite low. Everything else (even RBCs and iron, they said) were normal. They agreed to send me a script to have those antibody panels done. But now I'm wondering, shouldn't I still be anemic and have low iron, if celiac disease is my answer? I feel like I'm going crazy. I wish this idea had never even been put into my head.

We are all different in the way celiac effects our body. I would suggest either Doctors Best Magnesium powder as it is easier on the stomach. Or natural vitality calm, tad harsher but great if you have constipation also. Both of these I suggest starting at 1/4 dose then slowly adjusting it up. I personally get my vitamin D from almond milk and other sources. 

[cyclinglady]

Like Ennis said, we are all different in how we display celiac disease symptoms.  No wonder it is often hard to diagnose!  There are over 300 symptoms linked to celiac disease.

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[GalaxyDuster]

At this point, if I was to diagnose myself on symptoms alone, I'd be absolutely sure that this is what I have. 10 days ago, I would have never even considered it. Now I just feel so confused and crazy and unsure. What am I even going to do if this is not my answer? The pain in my back is so severe. I would love to have my answer and just make it go away. I hate feeling like I'm just crazy, crazy, crazy!!!

[Ennis-TX]

34 minutes ago, GalaxyDuster said:

At this point, if I was to diagnose myself on symptoms alone, I'd be absolutely sure that this is what I have. 10 days ago, I would have never even considered it. Now I just feel so confused and crazy and unsure. What am I even going to do if this is not my answer? The pain in my back is so severe. I would love to have my answer and just make it go away. I hate feeling like I'm just crazy, crazy, crazy!!!

I had alot of the nerve and mental issues with this disease. I WAS going crazy, like the brain fog and confusion topped with the anger of not knowing why my mind was looping on thoughts and not moving forward, and my hands were not moving like I wanted them to, so I could not work on stuff or play games. It was so frustrating, I was banging my head on walls, punching random things....I had knuckle prints in stainless steel appliances, and even found a stud in a wall plus a nail using my fist. EVERYONE thought I was going crazy, and I lost ALL my friends and my family still is distanced from me. Scared the s$#& out of everyone randomly flipping to mr hyde. Then you had the other issues with the gut and the low levels of magnesium causing more nerve issues.........

Now days I am so happy go lucky I do not get angry at anything. I get worried and stressed over life but smile or cry about it and no longer flip. Completely different person, top it off with no more pain, constipation, severe numbness, or brain fog it is quite wonderful once you get healing and work it all out.

[Kristen Bennett]

yes I was having many nerve issues and for a while my doctor was trying to test me for multiple sclerosis because we just absolutely cannot find what my issue was, we have been searching since I was a kid trying to figure out what it could be and it wasn't until now that it hit me my brother has severe celiac my grandmother as well and my dad, I had just switched to a gluten-free diet and I'm hoping to see progress with my symptoms because I had many of the neurological symptoms that can happen from celiac

[Jmg]

48 minutes ago, Kristen Bennett said:

I had just switched to a gluten-free diet and I'm hoping to see progress with my symptoms because I had many of the neurological symptoms that can happen from celiac

Welcome Kristen

If you've only just gone gluten free you may want to pause and try and get a test, otherwise you may find yourself having to undergo a gluten challenge if you want to confirm celiac. It may be worth starting a new thread and that will make it easier for others to get some more input?

[GalaxyDuster]

4 hours ago, Kristen Bennett said:

yes I was having many nerve issues and for a while my doctor was trying to test me for multiple sclerosis because we just absolutely cannot find what my issue was, we have been searching since I was a kid trying to figure out what it could be and it wasn't until now that it hit me my brother has severe celiac my grandmother as well and my dad, I had just switched to a gluten-free diet and I'm hoping to see progress with my symptoms because I had many of the neurological symptoms that can happen from celiac

I would definitely recommend getting tested first. Everything I've read so far (it's been less than 2 weeks of a learning curve, but I'm learning!) has said your antibody tests and endoscopy/biopsy tests may come out as false negatives if you start a gluten free diet first. Believe me, I've thought about trying it just to relieve this very long-standing suffering, but I really want the answer in plain writing first. I hope you find your answer and get to feeling better!

I am not sure if the pain in my back is part of this nerve damage process. Lately, even the skin hurts to touch (like, the touch of clothing). On my upper legs, too. It is just so weird. Feels like going crazy, doesn't it?

[GalaxyDuster]

On 4/18/2017 at 9:48 AM, icelandgirl said:

Hi Galaxy and welcome!

Although my worst symptom at diagnosis was D, I can completely identify with the painful gas and bloating.  I remember being so painfully bloated that it felt like there was a giant lead balloon inside of me.  I was so uncomfortable all the time.   I can still remember getting to the point of only wearing sweats because I couldn't stand the feeling of anything against my bloated abdominal area.  Ugh!  

Your old Dr was an idiot!  People do not accidentally lose 40 pounds for no reason at all.  I'm sorry that you've had to deal with that.  It's great that your new Dr has referred you to a GI.  While you wait for that appointment, would he be willing to get the ball rolling by ordering a celiac panel for you?  Any Dr can do that.  That would include: IgA, TTG-IgA, TTG-IgG, DPG-IgA, DPG-IgG and EMA.  

I'm so sorry that you are going through this misery!  Do keep eating gluten until all testing is complete!  Do keep advocating for yourself...you know that something isn't right!  Keep asking questions...this board has been an amazing resource for me ??.   

Big ((((hugs))))

I just wanted to say, because of your post I did ask my primary care doctor's office to order this antibody panel for me, and they thought it was a very good idea. I should be able to have it done next week (still waiting for my GI referral). Thank you!

[icelandgirl]

17 hours ago, GalaxyDuster said:

I just wanted to say, because of your post I did ask my primary care doctor's office to order this antibody panel for me, and they thought it was a very good idea. I should be able to have it done next week (still waiting for my GI referral). Thank you!

Hi Galaxy!

I'm so glad that you did that and that your Dr was helpful!  Keep doing that for yourself...if nothing else, it helps you mentally knowing you are doing something!?

Also, don't let anyone make you feel like you're crazy, you are not! You are the only person who knows how you feel physically and emotionally.  You are definitely in a rough spot right now, but with persistence you will get answers soon!

I was never anemic...just borderline.  We all have different symptoms.  I did have low D, but with supplementation it's in the normal range now.  Make sure that you do supplement with a good D3 and some magnesium.  Getting both of those up would help you too. 

I really hope you get the bloodwork done early next week and keep following up on that GI referral.

Big ((((((hugs)))))

[GalaxyDuster]

Thank you so much. It's so nice to have such friendly and helpful people to talk to while I await my answers. 

I had an interesting experience yesterday... I ate a bowl of Kraft mac n cheese... then passed out for 4 hours and woke up vomiting. I've had a lot of experiences like that after eating over the past 2 years, but I never put those pieces together because celiac disease was totally off my radar. Just found it very interesting. 

I've been pushing down lots of gluten-y foods just to make sure my tests will come out right. So tired of waiting! Really, if this isn't the answer to my 40 lb mysterious weight loss, fatigue, and painful gas/bloating... then what's left? Cancer doesn't seem likely in a 33 year old, but I am really scared. 

Thanks for helping me through this. Anyone who stumbles accross this place is lucky to find such supportive and kind, helpful people!

ETA: Another question. I take an antihistamine every day (sometimes twice) for the weird itching I get... will that affect the blood test?

[AnemiaJen]

My Celiac disease presented as yours did: anemia, unexplained weight loss, aches and pains (due to vitamin and mineral deficiencies from malabsorption), the abdominal burning (whether I ate or not), decreased appetite, itching, the works. Plus I had a mood like a gorgon, which wasn't helped by my friends telling me "how slender!" I looked. My bones were basically all that was holding me up.

I've had the blood panel too, which has proven very informative. I had a follow-up celiac panel after I'd been on the diet for over a year and it showed the diet was working.

I also went through an anger phase because my (now former) doc (who is also my dad's doc and knows he has celiac AND knows we're related...) just wrote me a prescription for antidepressants, whereas I might have been spared years of feeling crappy (my late 30s!) if he'd just ordered a CBC and found the anemia. I'm a woman and I feel like sometimes whatever you say to a doc (even female docs!), all they hear is "psych symptoms". It really made me mad. But I've always pooped like a champ so I didn't exactly have typical symptoms either. Then I thought about how long it took my poor dad to get diagnosed (decades), which was before there was all this awareness, and I feel grateful for the fact that it took comparatively far less time for me to get my diagnosis and start feeling better.

Don't worry about not finding stuff you like to eat: since gluten-free has become "the new thing" there are so many choices and the price has come down considerably since my dad got diagnosed (over 12 years ago). If your doc confirms celiac, then you'll be back on the (albeit gluten-free!) mac and cheese in no time, this time actually absorbing some of the mac and cheesy goodness!

Feel better and take care.

[GalaxyDuster]

I got my script from the doc... it's for total IGA and TTG-IGA. Guess that's a good start? It also says "fasting" on the requisition, do I really need to be?

[icelandgirl]

On 4/23/2017 at 8:16 AM, GalaxyDuster said:

Thank you so much. It's so nice to have such friendly and helpful people to talk to while I await my answers. 

I had an interesting experience yesterday... I ate a bowl of Kraft mac n cheese... then passed out for 4 hours and woke up vomiting. I've had a lot of experiences like that after eating over the past 2 years, but I never put those pieces together because celiac disease was totally off my radar. Just found it very interesting. 

I've been pushing down lots of gluten-y foods just to make sure my tests will come out right. So tired of waiting! Really, if this isn't the answer to my 40 lb mysterious weight loss, fatigue, and painful gas/bloating... then what's left? Cancer doesn't seem likely in a 33 year old, but I am really scared. 

Thanks for helping me through this. Anyone who stumbles accross this place is lucky to find such supportive and kind, helpful people!

ETA: Another question. I take an antihistamine every day (sometimes twice) for the weird itching I get... will that affect the blood test?

I totally agree...this board is awesome!  The people on here have been there for me through everything and it has helped so much!

I don't think antihistamines would affect the test at all.  I take an antihistamine daily as well for horrendous allergies.

[icelandgirl]

2 hours ago, GalaxyDuster said:

I got my script from the doc... it's for total IGA and TTG-IGA. Guess that's a good start? It also says "fasting" on the requisition, do I really need to be?

Hey again ?

It's a start, but I so wish they'd done the whole panel.  Some of us, myself included, test negative to the TTG-IgA.  I was positive on the DGP only.  I wonder if your insurance will only cover those 2?

Regardless, get them done as soon as you can!  Do you have a walk in lab where you live?  If so, go tomorrow.  Then you'll be a step closer to getting answers.

Good luck and keep us posted!

[cyclinglady]

No fasting required for a celiac blood test unless they were checking your blood glucose levels during the same blood draw.  

[GalaxyDuster]

Blood was drawn this afternoon... they said I could get results tomorrow or even the next day! I also have a GI appt scheduled for June 9th. I am so glad I will have at least some kind of answer pretty soon. I'll let you all know. Thanks again for being so helpful!

[GalaxyDuster]

Well guys, my blood test came back negative for celiac disease. Total IGA =161 (normal), IGA-TTG was < 1. I'm really quite surprised. My GI appointment was bumped up to 5/10 at least, so I won't wait til June to see them. My quest to find out where my lost 40 lbs went continues. Thank you all for your kidness and expertise while I waited for my answer. I can come back and let you know what they found out, in either case. Thank you very much again. All of you stay well!