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Can Someone Talk Me Down?
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19 posts in this topic

I made it 35 days gluten-free and noticed many changes: skin looked better, eyes looked better. My lab results continually got better where Ferritin & hemoglobin were concerned. The last blood test showed high lymphs and low neutrophils but didn't concern me since my body seemed to be going through quite an ordeal once going gluten-free in October. I'm awaiting new test results come Monday.

Last weekend I accidentally consumed gluten, I believe, both Saturday and Sunday. My arms are very weak. There's a lot of petechiae on both arms and my stools are very pale in color. I itch all over (no rash). I am so weak and have spent three full days in bed. Before, when I was glutened, I had symptoms but the constellation of petechiae, pale stool and itching were either not there or not close to being this pronounced. Even though the fatigue was intense, I at least began having a better outlook about the 4th day. Not this time. I'm so weak and feeling thrashed even though I've been in bed (except for lots of laundry two days ago which wiped me out).

Can any of you speak to the increase in symptoms? Could consuming gluten two days in a row increase the symptoms and recovery time this much?

I'm getting worried. I keep telling myself it really is just the gluten. Can gluten have this big an impact on other conditions? I keep thinking of the toenail a girl "picked off" my foot a few years ago. I feel like I'm about to turn into powder.

:(

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Has a doctor checked out the petechiae spots yet ?  Sounds like your liver or gall bladder is rather unhappy.  (and yes, gluten damage can do almost anything. Sorry.)

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I get trashed for weeks at a time. Tired, not like "oh I'm sleepy" tired, but the type of tired and fatigue where I literally can't sit up in a chair for 30 straight minutes. I have mental problems, neurological problems, I itch anyway but it gets worse, plus all my bowel issues. I'm sure I'm missing things that I'd remember if they were happening. And this is all from a single trace CC event. It is truly amazing what a single stupid protein can do to you.

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I'm seeing the hematologist on Wednesday. Add that my hair & eyelashes just started shedding. I am having a difficult time getting ready for the day and it's almost 1pm, not to mention, I look contagious. Guess I thought I'd be rounding the bend at this point... Really don't know what to say to people to whom I have commitments.

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Wow Adelaide. The last glutening lasted about 10 days and less symptoms. Guess I'd like it to remain on a predictable schedule :-(

Sorry folks. This is the pits.

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I'm sorry you are so unwell.  :(

 

Have you had your platelet count checked? Petechiae are tiny bleeds - hemorrhages - under the skin that can be innocent (from too much coughing or vomitting, or certain medications) to more dangerous problems like serious infection or autoimmune disease (I had this with ITP).

http://www.mayoclinic.com/health/petechiae/MY01104/DSECTION=causes

 

If things get worse, or don't improve, you might want to see a doctor sooner than Wednesday. I had petechiae and deep fatigue years ago from ITP, and by time they found it I was critical. If you have a lot of bruising, fatigue, and heavy menstral flow, please go to the doctor.

 

I hope you are well soon.

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Wow. i'm so sorry.

The lab technician did comment on the amount of blood that ran out of my arm when I neglected to apply pressure... I'll call the doctor. My hematologist is off on Friday. The doc will probably tell me to go to the hospital if I feel that sick. How does a person make that decision when unable to be objective? The last thing I want to do is worry my husband.

I do have moderate-heavy bleeding. My periods typically wrap up on the third day & this is day 3. No major bruising.

This would have to be on a Friday. Oh well. Ergh

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Well, the good news first.  You probably won't turn into powder.  At least I hope not.  Maybe you should keep some plastic baggies around just in case though. :)

 

The immune system is one of those gung-ho for the job type of things.  It will keep up it's attack on your body until it is satisfied that all the gluten cowboys that rode into town are dead, the horses they rode in on are dead, and the grass land those horses grazed on is scorched earth.  Sorry, the good news was first, this is the bad news section.  The antibodie production train will slow down and stop in time, but it could take 4 to 6 weeks, more or less..  The antibodies really, really don't likea the gluten.

 

You can try some Pepto-Bismol for your gut, and lay off sugar and starches for a while.  That might help.  Peppermint tea is good for getting gas out of the stomach if that is a problem.

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It does feel like scorched earth policy going on inside. Doctor said not to second guess petechiae rash so I'm sitting in the emergency room on a Friday afternoon. That's what I get for waiting.

Thanks guys.

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Good luck, Cali.  I am sorry you are sick and have to be sitting in the ER but I think that was a wise choice...and I hate the ER as much as anyone else.  keep us posted on how you are doing.

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Wow!  What a day.  My reactions did change after gluten free.  I think my body was too overwhelmed before gluten free to let me know that it didn't like it.  Stay away from gluten, you aren't at ground zero.  Get well and over it!

 

Diana

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Thank you, Gemini. I will.

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Thanks, Diana. It's difficult to get a clear perspective on whether or not I was just acclimated to feeling sick before or if my symptoms have become worse. I have been ill for a long time. It's overwhelming & foggy. Hoping this is nothing but a gluten flare and that I'm wasting everyone's time.

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Thanks folks. I checked out okay. Apparently there's nothing too big going on, except for a bill coming in the mail soon.

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I'm sorry my post was a bit scarey. I was about to reply to your reply to me, and then I scrolled down and saw you went to the doctor.  You periods aren't too heavy (I got up to 20 days once LOL) and without bruising I would guess it wasn't too critical.  I'm glad you got it checked out though... I'm sorry it wrecked your Friday night though.

 

So your platelet levels were normal? Did they share their results with you?

 

I hope you feel better soon!

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No I actually escaped out the back door. They ran so many unnecessary tests. Now I understand my Dad's agitation in those places. However, I am relieved to know. It cost a lot but at least I know my heart and lungs are in good working order too,

Really, I'd rather be safe than sorry and appreciate your support. That being said, I will probably not go to the emergency room again unless I'm bleeding from the ears. There's an urgent care around the corner someone in there told me about and they probably don't have the equipment to run all those stupid tests that just increased my anxiety. What?!? You want a chest x-ray? What?!? You want to do an EKG??

(I had the heavy duty period like that in my 20s and it scared the you-know-what out of me. Other than that, I'm a lucky woman.)

So, back to the simple gluten-free life for me. I really feel for everyone who goes through this (I know the veterans are well) but the ones where this is new. It's hard and confusing and those who DO have severe physical problems, sincere wishes for health and peace.

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There are still more and more petechiae appearing all over my body. I just found a medical journal article that identified petechaie as Dermititis Herpetiformis so that's the box I'm putting it in and will carry on without worry. The medical professionals at the hospital would be better able to help patients if they took a co-active dialogue workshop. I've never felt so marginalized and disrespected in a few short hours. The greeters and technicians were good but the people who work inside of the doctor's pecking order left a lot to be desired. Very arrogant. It seems the mere mention of gluten causing a reaction lands you squarely in the "oh God, here's another one" box. But still, they'll run a slew of unnecessary tests before a doctor ever sees you and throughout it all you're wondering what the lab work showed to kick off the need for a chest x-ray. (This is, I learned, is because "fatigue" may indicate pneumonia.)

I'll never again go into the emergency room without an advocate if I can help it. Going to just relax today and be thankful I have a healthy heart and lungs.

Have a good day folks.

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CaliSparrow, I hope you'll feel better soon.

 

The worse of bad days, and the worse of a glutening too, is that we lose objectivity. We know what has happened and we know "it's just the glutening" ("just!") but anxiety sets in and we get scared ("why am I feeling this way AGAIN? will it ever pass? what did I do wrong this time? is something ELSE wrong with me? will I EVER get my life bakc?"). I think, since glutening provokes also anxiety and depression, it is a vicious circle. When I'm feeling bad I'm trying now just to tell myself "it's nothing, be patient, weather this out and you'll feel better". I know, it's very hard.

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That is so true! Thank you. I'm going to incorporate TM back into my life. Even if I were dying, it could only help.

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    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
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