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I'm Going Crazy.

Mysh

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Mysh Rookie
Mysh
Posted

I've been gluten-free now for a little over 3 months and although I started out quite positive (pure relief to have a "name" to what's been going on) I have become exceptionally frustrated and I'm honestly wondering if things have taken a turn for the worse and not the better.

Since going gluten-free I have developed DH. I'm at the point where I am itching ALL the time. I hate it and it is making me very depressed. Never once before going gluten-free did I have a sign of DH. Doc didnt want to prescribe anything, said to use over the counter cream - which does help a bit but will send me broke if I have to keep it up.

I've also added previously non existent bowel issues into the mix. I can't go anywhere without needing to keep an eye out for the nearest toilet and I've suffered some very very close calls.

My iron levels are shocking. No change in almost 12 months. Doctor says now that I am gluten-free, it should resolve itself and just to keep taking iron supplements. Despite taking a very high dose, I'm still suffering very loose BM.

I'm also geting very sharp pains under my right rib/breast area. I have contemplated going to the ER several times because of it, but just when I get to the point of going, the pain does subside. Can last from anything ranging 30 mins to 3 hours.

I've always been a good sleeper. Not anymore.

My antibody test last week shows I still have low levels. Not sure if I'm still coming off gluten or still injesting it.

My diet has become very restricted despite being an excellent cook. I've just lost confidence.

Still very fatigued. Want to sleep or stay in bed.

My question is - why do I feel so bad, and infact, worse than I did before my diagnosis? I am seriously contemplating going back on to a gluten diet. I know the risks, but I cannot in all seriousness seemyself living like this for another 20 years when I'm struggling to get through the day. I feel worse than I did before going gluten-free.

Any thoughts? Suggestions welcome. TIA

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Roda Rising Star
Roda
Posted

Your iron levels are not going to correct itself over night. If you gut is not healed all the iron pills in the world won't help. Just last month my iron levels are starting to normalize. I still have a way to go though and I have been gluten free for a year now. I was told the same thing about my iron so not true. I didn't start oral supplementation again until this August. I know I am healed and I am absorbing it now. My latest feritin is 33.(needs to be around 70) My ferritin started at 4 three years ago and only went up to 10 after 6+ months on the gluten free diet alone. It sounds like you are either getting cross contaminated from your shared kitchen or more likely you could have something else going on. You could possibly be having gallbladder trouble with the symptoms under the right ribs. Diarrhea can go along with it too. I hope you can figure it out and not give up.

ravenwoodglass Mentor
ravenwoodglass
Posted

I would suggest you evaluate everything your consuming and coming into contact with. It sounds to me like you have gluten sneaking in somewhere. Check all your toiletries, have you changed out the stuff in your kitchen that you need to- toaster, condiments (no sharing) cutting boards etc, how much do you eat out? Do you go out for drinks and if so what are you drinking? Do you do crafts that use clays or glues or are you doing remodeling, some of those products are toxic to us and we need to take precautions when using or find an alternative.

The problems your having are not going to go away by going back on a full gluten diet, they will instead get worse. It is hard the first few months to ferret out all hidden sources of gluten. It also makes it hard that some of us can get away with CC risks more than others. With the DH flaring that is a sign you may be someone who has to be really, really careful in the beginning especially cause you want those antibodies to stop forming in the skin.

Please don't give up. It takes time to heal, for some of us longer than others.

carsondcat Newbie
carsondcat
Posted

I agree with what the others are saying... plus high doses of Iron can give you either constipation and or diarhea, definately get that pain in the RUQ checked out.. you haven't mentioned your haemoglobin levels.. get those checked too. The malabsorption issues are a real pain and how much damage you have sustained from eating gluten has a determination on how quickly you heal. When i was first diagnosed i was put on a cousre of Iron injections IM (sore and discoloured backside for a while) but worth it. Malabsorption of Iron has been a huge issue for me and I have peaks and troughs but basically I've had to take oral iron ever since.. Don't even need to get tested now I know by how I look and how tired I am that I'm low on Iron again. Yes it does have a tendency to grind you down..

Do you really know the risks of going back on gluten I wonder... My (undiagnosed) until her death Nan died fron Bowel Cancer, it's certainly not a risk I'm prepared to take. Despite the ups and downs I'm Gluten Free for life. For me Gluten just isn't a risk worth taking.

Tigercat17 Enthusiast
Tigercat17
Posted

Hang in there Michelle!

I'm in the same boat as you. I've been gluten free for almost 2 and a half weeks now & seen little improvement. I feel horrible. I even cut out dairy because it was making my acid reflux worse. I know it's frustrating trying to figure out where you're getting the gluten from. My hair & bones are thinning, I'm having trouble maintaining my 100lbs. & I'm 5"1. And I know I'm deficient in all of the vitamins & I'm only 38. But, I know eventually I'll feel better...hopefully.

I do think dealing with this disease is so stressful on us, too -mind & body. The constant worrying makes it hard for our bodies to heal fast. And not to mention how long we had this disease before we found out. For me, I think the stress of watching everything I eat or put on my body is making me sicker because I'm so stressed. This Thursday I'm taking the day off & going to a movie with my husband. I've been sick since July & haven't been out of the house - to have fun, that is -instead of reading food labels at the grocery store. :P

Maybe try some mediation tapes or soft music to listen to while you're trying to sleep. I've been using mediation tapes to go to sleep with & they've helped me a lot. It's very relaxing. This also may be why your body is so stressed. Not getting enough sleep is not good for. If you'd like the name of the mediation tapes I use, just pm me & I give you the information. I have five different tapes & they've helped me with the anxiety, too.

I know it's hard, but don't give up. I really feel your pain. Hang in there! :)

And get that right side looked at, too. Just to be on the safe side.

Take Care!

Laurelf Explorer
Laurelf
Posted

Mysa,

I started getting really bad pain under my right breast last night and it hasn't gone away. I too am wondering if this is related to celiac.

I have been gluten free for a couple of months now but I still get DH flairs and occasional diahhrea. I haven't eliminated milk completely though, even though Enterolab found I have IgA levels to casein. I thought I could get away with taking Lactaid, but I think my milk intolerance goes deeper than lactose intolerance.

I am curious if anyone has an answer to the breast pain issue?

Hang in there - if I find out any more about the pain, I'll repost but I'd love to hear if anyone else has had this.

Laurel

ravenwoodglass Mentor
ravenwoodglass
Posted
Mysa,

I started getting really bad pain under my right breast last night and it hasn't gone away. I too am wondering if this is related to celiac.

I have been gluten free for a couple of months now but I still get DH flairs and occasional diahhrea. I haven't eliminated milk completely though, even though Enterolab found I have IgA levels to casein. I thought I could get away with taking Lactaid, but I think my milk intolerance goes deeper than lactose intolerance.

I am curious if anyone has an answer to the breast pain issue?

Hang in there - if I find out any more about the pain, I'll repost but I'd love to hear if anyone else has had this.

Laurel

Laurel, Please do eliminate the dairy, at least for the time being. The enterolab tests showed a sensitivity to the milk protein, casien. That is different from milk sugar, lactose so the lactaid will do nothing to help with that issue.

That could be causing your pain but it is gluten sneaking in that is causing the DH flairs.

Do try some name brand Pepto Bismal liquid for the pain you are getting. It may help really quickly.

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Tigercat17 Enthusiast
Tigercat17
Posted
Laurel, Please do eliminate the dairy, at least for the time being. The enterolab tests showed a sensitivity to the milk protein, casien. That is different from milk sugar, lactose so the lactaid will do nothing to help with that issue.

That could be causing your pain but it is gluten sneaking in that is causing the DH flairs.

Do try some name brand Pepto Bismal liquid for the pain you are getting. It may help really quickly.

Now that I'm thinking about it, I too, get the pain under my right breast too. But I do have more, stronger pains on my left side under my rib cage. And it really hurts right now. I just had dinner. I think maybe the canned spinach (Delmonte) didn't agree with me. It's the only thing I ate different. Maybe I have a little allergy to spinach. I never did like it. I just ate it tonight to see if I could stomach it since it's supposed to be good for you.

Has anyone else gotten this pain on the left side? It's been there for about three months & it comes & goes. It's right under my ribcage. The pain is kind of hard to describe, but it feels like a pinching feeling or maybe a pins & needles feeling.

Hi ravenwoodglass, do you think the Pepto Bismal would help me with the pain I'm having on the left? I never thought of it...

Thanks!

SGWhiskers Collaborator
SGWhiskers
Posted

Hang in there. I tried my hardest for 3 months with minimal improvement and repeated glutenings. As time went on, I got better at avoiding the gluten and could go longer between cross contamination. I didn't stop glutening myself until I followed all the strictest recommendations of the experienced folks here. All the sources of cc, the household and hygine products, nail biting, bbq grill, replaced cooking utensils, gluten-free kitchen and no eating out. I was crazy with the strictness. Then my body found the consistency to improve. The first months drug on never-ending, but the year passed quickly and now new healthy habits have formed. I've reintroduced my husband to gluten without cc-ing myself. He now knows what foods have gluten and can cook for me when I'm feeling tired. Hang in there and ramp up the strictness until you are better healed.

And after all is said and done, the only food I miss is cheese. (milk allergy). The rest has found a replacement or wasn't worth missing. (I have an excuse to buy the BEST chocolate now. Gotta be milk and gluten free you know ;)

ravenwoodglass Mentor
ravenwoodglass
Posted
Now that I'm thinking about it, I too, get the pain under my right breast too. But I do have more, stronger pains on my left side under my rib cage. And it really hurts right now. I just had dinner. I think maybe the canned spinach (Delmonte) didn't agree with me. It's the only thing I ate different. Maybe I have a little allergy to spinach. I never did like it. I just ate it tonight to see if I could stomach it since it's supposed to be good for you.

Has anyone else gotten this pain on the left side? It's been there for about three months & it comes & goes. It's right under my ribcage. The pain is kind of hard to describe, but it feels like a pinching feeling or maybe a pins & needles feeling.

Hi ravenwoodglass, do you think the Pepto Bismal would help me with the pain I'm having on the left? I never thought of it...

Thanks!

The best way to tell is to try it. I was totally shocked when the pain I had went away within minutes of taking the first dose. You have nothing to lose by giving it a try.

sadeew Newbie
sadeew
Posted

You might want to get a full food allergy panel to make sure you aren't reacting to something else. Some people wind-up eating more of another allergen or food they can't tolerate and don't realize it is a problem.

I have a serious problem with soy. I never ate it until I went gluten-free then started eating things made wiht soy flour. I got super sick and felt awful. The only flour I eat now is rice and garbanzo.

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