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Losing Hope...
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Isn't that the truth! In the dictionary, I think the words Doctor and Arrogant are synonymous :) They like use that insulting word too... Psychosomatic... when they have NO idea what else to say.

Except for my doctor. He is wonderful! Thorough, empathetic, knowledgable, understanding and he does not make me feel rushed at all. He loves it that I bring a list of questions to ask. All this plus he is HOT! Wow. And the good thing is he has no idea! :P

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Except for my doctor. He is wonderful! Thorough, empathetic, knowledgable, understanding and he does not make me feel rushed at all. He loves it that I bring a list of questions to ask. All this plus he is HOT! Wow. And the good thing is he has no idea! :P

Clone him - quick ;)

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Clone him - quick ;)

Yeah! If we could only clone all the good docs. Sigh.

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Clone him - quick ;)

My physical is in two weeks (shudder) - I'll try then and see if he notices he is being cloned.

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My physical is in two weeks (shudder) - I'll try then and see if he notices he is being cloned.

laugh.giflaugh.giflaugh.gif

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My physical is in two weeks (shudder) - I'll try then and see if he notices he is being cloned.

He won't miss one little hair :P

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laugh.giflaugh.giflaugh.gif

Would he notice my asking him for a cheek swab for his DNA? :lol:

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Aw heck, just tell him outright that us gals on the celiac site want to clone him! He'll be flattered.laugh.giflaugh.giflaugh.gif

Tell him we're fans!tongue.gif

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Except for my doctor. He is wonderful! Thorough, empathetic, knowledgable, understanding and he does not make me feel rushed at all. He loves it that I bring a list of questions to ask. All this plus he is HOT! Wow. And the good thing is he has no idea! :P

Do we have the same doc?? Cause I feel like you just described mine! Haha love it! 😃😃😃

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Oh GOODIE!!!!!! Two hot, wonderful doc to clone from. YES!!!!tongue.gif

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I took a gluten-challenge for just one day. I was hesitant but did it. Thought I would do it for at least 3 days. No way! I was fine for about 8 hours. Then stomach cramping, PAIN, and achy all over. Today I am weepy for no reason and feeling anxious as well. I hate this feeling. I'm back to eating only gluten, soy and lactose free today although I don't feel like eating at all.

May not be celiac but it sure is intolerance.

Given that Celiac is an autoimmune disease - is it treated differently than gluten intolerance?

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No. Gluten free is the treatment either way. The only thing would be to have your ferritin (iron) levels checked along with your B-12 & thyroid panel, CBC & CMP.

Sorry you fell like &*^%. (((HUGS)))

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I took a gluten-challenge for just one day. I was hesitant but did it. Thought I would do it for at least 3 days. No way! I was fine for about 8 hours. Then stomach cramping, PAIN, and achy all over. Today I am weepy for no reason and feeling anxious as well. I hate this feeling. I'm back to eating only gluten, soy and lactose free today although I don't feel like eating at all.

May not be celiac but it sure is intolerance.

Given that Celiac is an autoimmune disease - is it treated differently than gluten intolerance?

I went through 4 months of testing by 3 different doctors. I had multiple blood tests, genetic tests and a biopsy. They all agree that I do not have Celiac disease but 2 out of the 3 doctors believe I am Gluten Intolerant. I was told again today by my primary dr to stop eating it. I seem to not be bothered by cross contamination, and since I dont have Celiac disease, I dont worry about trace amounts, or food touching. But what I feel when I ingest a good amount of bread, or pasta, or baked goods and stuff is enough to send me to bed in pain and like you, I weep for no reason.

For both Celiac and Intolerance, the only treatment is to live gluten free. I feel better after 2 days of being gluten free again (tried it before for 3 weeks and OMG I felt so good!) than I have felt in months. It is very worth it. here it is 5pm and I dont need to take a nap, that doesnt sound like much but for me it is AMAZING. I am usually useless by 7pm.

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I've been doing relatively well. I added a digestive enzyme along with probiotic, prilosec and have been gluten, lactose and soy free for several weeks now. I did ONE day of gluten challenge and while it took hours before I reacted, it wasn't pretty. So I'm totally committed to my strict diet regimen. BUT ... I'm stumped. I bought and baked corn muffins from Really Great Food Co. - the ingredients were White rice flour, potato starch flour, organic cornmeal, sugar, aluminum-free baking powder, xanthan gum, salt. I used 2 eggs and Almond milk. They tasted great. And within 2 hours I had cramping. I didn't think it could be the muffins so today I ate 2. And the cramps came back and I got sick.

I don't have problems with the almond milk and if I eat eggs I sometimes get a rash but haven't had any problems eating food with eggs in it.

Any thoughts?

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Nice to hear you're mostly doing well. (Esp w/ thread's title, right?)

I've read of ppl here w/ specific xanthan gum issues & of course we can have rice, potato, or corn problems but at least those are easy to check & you probably already know they're fine or wouldn't have tried the mix.(?)

How about the pan? Anything less than brand new has to be questioned at this point. Or maybe the muffins were in cupcake ....uhh .. .cups?

Not sure what's a good type of product to test xanthan gum with. I'd think ideally w/ a short list of other status-known ingredients. Hoping others have some ideas/experience.

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I agree with the above advice, but would recommend you trial each ingredient separately so you know if it is the corn, rice, potato, or Xanthan gum giving you problems. Clearly it is something in that mix. It might even be the egg, since it is possible to develop a reaction to foods at any time. Maybe baked goods with egg WERE ok but they are not now? Glad to hear you are doing mostly well with being gluten free. You have the longest thread I have seen that wasn't a common thread like "what are ya cooking tonight". Keep posting and let's see if we can get it to 100 just for fun! ;) Oh yeah, plus we like to know how you are doing! :)

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I would question the cornmeal. I was doing fine with plain Fritos then all of a sudden I started to have bad reactions to corn. You never know if they're using GMO corn? You could possibly have a reaction to GMO corn that you wouldn't have to regular corn?

It's very frustrating to think you're on track..and being so careful and then whammo..out of the blue something bothers you! I'm hoping it was just a one time reaction for you.

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I would question the cornmeal.
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Results of abdominal Ct scan arrived. Inflammation of unknown origin. Ha!

Whatever it was that I ate (corn muffins or not) it's hit me hard. I am in pain and not able to tolerate any food. If my insides are so inflamed maybe no solid food is better for a while. I was doing so much better and then, wham! Ate a plain baked potato last night. Ended up with more pain, bloating and cramps. But that is happening now no matter what I eat so it could be inflammation rather than the actual food, right?

I knew I spoke to soon in my earlier post.

I am hoping that new doc will connect me with a GI though at this point I don't have much confidence in doctors.

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If it is potatoes causing the problem then you might be reacting to nightshades. NIghtshade foods are tomatoes, potatoes, peppers, and eggplant. Nightshades can have enough alkaloids in them to cause problems for some people. Tobacco is a nightshade too. Not to 100 yet.. :)

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Results of abdominal Ct scan arrived. Inflammation of unknown origin. Ha!

Whatever it was that I ate (corn muffins or not) it's hit me hard. I am in pain and not able to tolerate any food. If my insides are so inflamed maybe no solid food is better for a while. I was doing so much better and then, wham! Ate a plain baked potato last night. Ended up with more pain, bloating and cramps. But that is happening now no matter what I eat so it could be inflammation rather than the actual food, right?

I knew I spoke to soon in my earlier post.

I am hoping that new doc will connect me with a GI though at this point I don't have much confidence in doctors.

Have you been tested for small intestine bacterial overgrowth (SIBO)? I was reacting to more and more foods and was tested. They said I probably have a severe overgrowth, because not only was my hydrogen high..I exhaled methane which is very unusual. I was told that the bad bacteria feed on what we eat and emit toxins. They can give us very strong reactions.

There are a lot of different strains of bacteria and the ones that really like whatever you've been eating seem to thrive, so that your levels of various ones can change as what you eat changes...thus giving stronger reactions to foods sometimes.

I hope you've found a probiotic that agrees with you? It helps even out dysbiosis.

Try a diet that's bland for a bit until you feel better. Cooked veggies are easier to digest than raw. Have you tried Brussel Sprouts? They seem to be easily tolerated by most people.

I hope you can find a good GI. I have a fairly new PCP who isn't very helpful. She said up front that she didn't know anything about Celiac disease when I first met her. I just saw her on Friday and she told me I should find a good GI. Umm..duh! I told her I haven't found a good way to find one locally. They don't advertise as being Celiac savvy. There were a couple of names I saw in various news articles, etc. but they aren't accepting new patients.

If there's a good way to find a good GI I haven't found it!

I'm still struggling to put weight on and get more healthy. This new PCP told me I should try to gain some weight. Umm..yeah..very helpful.

We're getting there GFinDC. ;)

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....

We're getting there GFinDC. ;)

Oh, look at that, we are indeed getting there! Close now, really close.

But if you want to read a long thread, search for the lyme disease thread Now that was a long thread.

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Well, I guess since I started the thread I should finish it as #100.

My (fired) PCP called me tonight to "further discuss" the results of my CT scan. She is "extremely concerned" about the level of inflammation and has asked me to have a colonoscopy and endoscopy "stat". Says that the inflammation is profuse throughout intestinal tract and lymph nodes are slightly enlarged. She brought up cancer and that scared me. She says that because I am still sick after I eat - even though I am on a strict diet - that it's "not likely what you are eating" ... I doubt that because of all that I have learned from this site. Maybe she should come on here and learn!

Anyway - what I want to say is THANK YOU. Without this site, without this thread I would have lost hope. It was here that I found answers to my questions, questions that I didn't know I had and a lot of compassion. I don't know what the future holds for me - maybe celiac, maybe inflammatory bowel disease, maybe food sensitivity, maybe cancer. But no matter what I got through this summer because of all the help I got here. I got educated and that's worth its weight in gold.

I also wanted to say that I think of each one of you and I often come and re-read your posts. I hear your own painful journey/s and am honored that so many of you shared with me here.

I know that this thread has taken on a life and it's rare that one goes this long. Thank you all so very much.

I'll be around - reading lots of posts, continuing this journey along with all of you.

((hugs))

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Don't let your Dr scare you! Mine kept telling me there was nothing wrong with me and ordered a CT scan just to shut me up. It showed a lot of very enlarged lymph nodes. It's what finally got me the referal to a GI and the endoscope that DXed me.

My enlarged nodes were caused by the inflamation of Celiac disease. Yes, it can be a symptom of cancer, but it's not very likely.

Because I had an intestinal cancer in the past the CT scan was repeated a while after my Celiac DX just to see how things looked. My nodes had started going down and returning to normal.

I was told the enlarged lymph nodes were caused by the eliac 100%

PS..it was very fitting that you were poster #100. :D

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Yes, it was very fitting that you were poster #100 Kswan and I want to thank you for continuing to ask questions because I have learned a lot. Thank you Bubba's mom for your information on here and especially for your last post because it gives hope on the losing hope thread. I did not know that could happen and it makes me feel good to know you have been there and survived and it really was Celiac that caused it and that has to mean a lot to Kswan too, so thank you.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • 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. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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