Celiac Sprue & Doctor Too!

[Canadian Karen]

Welcome Russ, and all other docs who care to join us!

I second that! Welcome to Russ and Ann.......

We have to keep in mind that in the spectrum of this forum, Russ and Ann are just two people who are just as lost in the celiac world as we were when we began and they have come on this forum for help, reassurance, guidance and support that we all need when faced with the daunting task of learning to live gluten-free.

So Russ and Ann, feel free to ask away! Our motto on this forum is that the only stupid question is the one NOT asked......

Hugs.

Karen

[mamabear]

Many thanks to all for all the encouraging and kind words. I look forward to participating in this forum and continuing to accelerate my learning curve about celiac!

[angst2amity]

Sorry I can't give specific advice, but there are definitely neurologic symptoms of sprue as well as associated neurological conditions. I am not sure how to figure in all your fever with any direct celiac cause. I would hope you have a neurologist,infectious disease specialist,rheumatologist, internist and ear/nose /throat guy... You have a complex array of problems and good luck to you. Please keep us posted as to your evaluations.

[mamabear]

Hi guys,

I posted a few other places but I had my second sinus surgery today and my right sphenoid sinus (center of brain) was expanded and completely filled with a solid gelatinous fungus. So everything I ate made it very happy, grow bigger, give me a fever, all of the antibiotics helped kill my good bacteria. This is so rare, about 15 doctors didn't believe me that maybe they should look at it being a fungus. The first ENT refused to culture!!!!! It got ten times worse! But maybe made me realise I might have CS - so maybe a blessing...

I have to have a majorly compromised immune system for this to happen. Based on my new gluten-intolerance and the constellation of DX in my family I think it is from Celiac. This gives me hope, if I follow the diet, more than likely I can clear up weird health problems! Plus they tested me for just about every other immune causing problem.

Another poster said to use a probiotic sinus flush - I may add some to the plain flush they gave me to wash out residual chunks

Thanks for the support and ideas!

I am so glad to hear you are getting some answers to your problems! Sounds like you may have gotten some docs to listen up and think outside the box,too. Good for you! Keep on getting well and please keep us informed.

[ckaloha]

Hi docs and everyone,

It's been good to come here and read. It answers some of my questions, makes me feel less crazy. I am learning, but have a long ways to go. Hopefully, someday, I can provide some suggestions to others. Until then, I have another question. And it is not a crucial thing, just trying to think this thing through.

I understand it is the villi that are damaged by gluten, and therefore cannot absorb nutrients properly. When you go gluten-free, do the villi repair themselves? Or is there another benefit process to gong gluten-free?

I thought I was pretty smart this week until Thursday. I had made an appt with an NP, but that had to be cancelled by that office. Made an appt with a GI doc instead. They called later same day, said that appt had to be cancelled, rescheduled for March. There were a few other things that day that got me worked up, so I was back to feeling pretty alone and with less hope. That is passing, and I WILL continue to expect things to get better.

ckaloha

[nikki-uk]

Hi docs and everyone,

I understand it is the villi that are damaged by gluten, and therefore cannot absorb nutrients properly. When you go gluten-free, do the villi repair themselves? Or is there another benefit process to gong gluten-free?

When a coeliac removes gluten from their diet it allows their villi (which get damaged from reacting to gluten) to regrow thus allowing you to absorb nutrients much better.

Many coeliacs feel so much better in their overall health after going gluten-free for a number of reasons.

Many are anaemic before going gluten-free because they can't absorb iron - some (my hubby included) was also diagnosed with osteoporosis due to not absorbing calcium - so hopefully that will right itself.

Aside from the obvious improvement in bowel habits many get their energy back and feel more 'clear headed'.

Many 'unexplained' ailments may disappear on a gluten-free diet (joint and muscle pain is another common one)

Of course the rate at which you heal and begin to feel better varies enourmously from person to person.

Alot depends on what age you are diagnosed, how long you've had celiac disease untreated and how much damage has been done. Children generally feel better much quicker.

For my husband (dx with celiac disease at 40yrs) it took him a good 18 months to feel any benefit - but others feel it straight away!

...and of course the gluten-free diet is a much healthier way of living as it keeps you away from junk food!!

Sorry your appointment was cancelled!

Good Luck

[mamabear]

Hi docs and everyone,

It's been good to come here and read. It answers some of my questions, makes me feel less crazy. I am learning, but have a long ways to go. Hopefully, someday, I can provide some suggestions to others. Until then, I have another question. And it is not a crucial thing, just trying to think this thing through.

I understand it is the villi that are damaged by gluten, and therefore cannot absorb nutrients properly. When you go gluten-free, do the villi repair themselves? Or is there another benefit process to gong gluten-free?

I thought I was pretty smart this week until Thursday. I had made an appt with an NP, but that had to be cancelled by that office. Made an appt with a GI doc instead. They called later same day, said that appt had to be cancelled, rescheduled for March. There were a few other things that day that got me worked up, so I was back to feeling pretty alone and with less hope. That is passing, and I WILL continue to expect things to get better.

ckaloha

If you have celiac sprue, it is imperative you follow the gluten free diet in order to heal, but it unfortunately is no guarantee healing will occur. Fortunately that(refractory celiac disease) is the exception. Not sure what the latest statistics are. I think another benefit is decreasing your chances of having other autoimmune phenomena occur. I personally believe it is a spectrum of disease, with gluten sensitivity on one end and refractory sprue on the other...following the diet helps us to help ourselves!! Getting well and staying well.

It's really not all that hard. Someone told me to think of it as eating what your great grandmother would have eaten 200 years ago(minus the bread of course!)...no processed foods, all fresh!

[mumseyh]

If you have celiac sprue, it is imperative you follow the gluten free diet in order to heal, but it unfortunately is no guarantee healing will occur. Fortunately that(refractory celiac disease) is the exception. Not sure what the latest statistics are. I think another benefit is decreasing your chances of having other autoimmune phenomena occur. I personally believe it is a spectrum of disease, with gluten sensitivity on one end and refractory sprue on the other...following the diet helps us to help ourselves!! Getting well and staying well.

It's really not all that hard. Someone told me to think of it as eating what your great grandmother would have eaten 200 years ago(minus the bread of course!)...no processed foods, all fresh!

Very well stated Ann! My family doctor also mentioned the spectrum analogy. This is what I will present to my GI doc on the 19th. I am already anticipating him being defensive. After the biopsy, he told me I don't have celiac disease, and going gluten-free would be very difficult. Six months later, a positive response from the diet is all the evidence I need (besides a new doctor).

Nancy

[mamabear]

Very well stated Ann! My family doctor also mentioned the spectrum analogy. This is what I will present to my GI doc on the 19th. I am already anticipating him being defensive. After the biopsy, he told me I don't have celiac disease, and going gluten-free would be very difficult. Six months later, a positive response from the diet is all the evidence I need (besides a new doctor).

Nancy

Please be sure and give an update after your visit to the GI doc. It will be interesting to see how he reacts to your improvement. Some of the GI's around here understand the negative biopsy after a gluten-free diet for several months is a GOOD thing!

[mumseyh]

Today I had a follow up appointment with my G.I. doc. It turned out differently than I expected. The first thing he noticed is that I have lost 35 pounds since the last visit in July (in my case, it is a good thing). When I mentioned the spectrum analysis, he backpedaled on his previous comments about either having celiac, or not having it. He agreed that I have reacted positively to the gluten free diet. I inquired about a capsule endoscopy, and he said he can justify it as long as my blood work shows anemia (which it probably will). He also said my Barrett's esophagus is very minor, and needs to be checked once a year for now. I feel a little better about this guy than I did before. It probably helped that I had my husband come in the room with me. We thought strength in numbers would be helpful today.

[mamabear]

Today I had a follow up appointment with my G.I. doc. It turned out differently than I expected. The first thing he noticed is that I have lost 35 pounds since the last visit in July (in my case, it is a good thing). When I mentioned the spectrum analysis, he backpedaled on his previous comments about either having celiac, or not having it. He agreed that I have reacted positively to the gluten free diet. I inquired about a capsule endoscopy, and he said he can justify it as long as my blood work shows anemia (which it probably will). He also said my Barrett's esophagus is very minor, and needs to be checked once a year for now. I feel a little better about this guy than I did before. It probably helped that I had my husband come in the room with me. We thought strength in numbers would be helpful today.

Fantastic!! Persistence pays off !! Maybe he did some current reading on the subject

I'm glad things are going well.

[Charsweb]

Welcome Russ[ This is my first post and just found this web site. I have had IBS for about 20 years and immodium has been my lifesaver.. A few days ago a former co-worker stated she had Celiac and and if I fot better on the Atkins diet that I may have it as well. So I am I am going to check it out. As with anything any doctor will only be as good as he is by being open to suggestions by his or her patients. I always love being able to discuss all posibilites with my doctors and I think that we have learned from each other. I totally agree with you in that any one with a disease will know many things that it that the average doctor would not be aware of.

I had a work up several years ago for abdominal pain and diarrhea and the GI doctor said its IBS. I had H-pylorie and after treatment that solved my stomach pain. Still had abdominal pain with the diarrhea off and on. Last September I started with the abdomial pain and had EGD with results of H-pylorie again and gastritis and deuodonitis. Prev Pac done still having abdominal pain and diarrhea. Have an appt 1/30 and am going to ask for Ceiac panel. An umbilicated ampullary nodule was found several inches above Sphincter of Odi and a ERCP was recommended. The appt is with another person other than the one who did EGD.

My sister has a wheat, soy and lamb allergy and I have suggested she have herself checked for Celiac Sprue. As far as the EGD goes what should she have for dedation?

Thanks so much for any suggestions. Oh, neither of us are underweight.

Thanks,

Charsweb

quote name='RKB_MD' date='Aug 12 2006, 09:50 PM' post='185029']

Yes, I have Celiac non-tropical sprue, and I'm a USA trained M.D.

Sorry, but I'm not a GI doc, nor a family practice/ general practioner. I'm "just" an anesthesiologist. And, I can assure you that all the meds we use in anesthesia are gluten-free!

I do know the physiology and molecular biology behind our disease, and I'll be happy to contribute what I can to the conversations, but as you all well know, we as people with CS usually know more than the "average" doc about this problem.

Ask away, I'll be asking you too...

Russ

[Charsweb]

[mamabear]

1. 
   
   

Hi GFMemphis:

This is my second post and I have read all of yours. I just posted to Russ and wanted to say Hi and

Welcome to you too.

I also grew up in Jonesboro, Ak. and still visit relatives there. I also go to Tunica!!

I thought about going on the gluten free diet but, since I already have an appointment in 2 weeks I will wait and see what

would shows up with the tests. I think that if the test were positive then I would definately stay on a gluten free diet.

You were speaking of twitching muscles. Just 2 days ago my right upper eye lid twitched for hours. I also have peroidic limb movements Dx with sleep study. In the past I have had very painful posterior thigh cramps and get cramps in my ribs muscle. I have also watched my lower abdominal muscles twitch.

I am also an RN and because of that some doctors have in the past thought I read too much into my symptoms. Over time they were proven wrong.

I have seen the pictures of skin problems but are there any other skin problems that people with Celiac Sprue have?

If possible could you post that article from the journal?

Thanks,

Charsweb

Hi Charsweb,

The article is nearly a zillion pages long so if you follow my lead on that post, you should be able to get it. I'm not the best at computers.....I still haven't figured out to make a link to another site !

If you think you have celiac, wait for the testing before you go to the diet, especially if it's a short time away. If it's all negative, and you still want to try the gluten-free diet,I certainly wouldn't fault you,though the article does make somewhat of an argument to have a certain diagnosis before you do that. And yes, there are a host of other dermatologic problems associated with celiac,but none are diagnostic as dermatitis herpetiformis(hives,eczema,psoriasis to name a few). I had found a very long article about celiac and skin conditions on the National Library of Medicine website several months ago. It should still be available as they keep articles from the most recent publications to ~40 years ago. Put NLM on a search, and the web address should pop up. I got it. It's www.ncbi.nlm.nih.gov/entrez/query.fcgi

Happy surfing !!

[Jestgar]

Hey GFMemphis!

I'm glad you're still here! I was afraid you were feeling taken advantage of and decided to lay low.

I really appreciate the fact that a medical professional is following a non-professional board and so has a much better understanding of the people coping with the disease, rather than the disease itself.

Thanks.

[stef-the-kicking-cuty]

Hello there,

welcome to Russ and Ann! I have some questions and answers at the same time! I had muscle twitches in my calves, thighs and eye lids. After going glutenfree, they all disappeared. But there's another thing, that is almost gone. My right eyelid used to sink down, when I started to get tired. When this happened I wasn't able to open it on my own. After going glutenfree this disappeared as well (sometimes it's still there, but very very vague). Doctors told me, this was a nerve damage and I would never be able to get rid of it, but I did.

Now there's a question to Russ! A lot of times, when I get anasthetic, it is not working at all. Examples: My celiac was triggered during a tooth surgery, where the anasthetic didn't work. Another time I got stitches on my forehead, after busting my head open and the anasthetic they gave me, didn't work at all either.

Now, you mentioned eggs. When I eat eggs, I have strange gases, but I can't really say that I'm allergic or anything. Nor am I allergic to soy. Now my question is. Does this have anything to do with being celiac? Why does this happen? What can I do to resolve this problem? It annoys the heck out of me. I'm pregnant and I'm getting paranoid about the epidural not working. I have a friend that received an epidural and she had a c-section. She screamed, because she could feel the doctor cut her open. I already get horror visions.

Stef

[Nancym]

Something weird happened to your font:

-Are bananas still considered one of the best ways to help “cure” a bad reaction? I can understand the K+ replacement aspect (I’m having muscle weakness and some neuropathies today), but is there anything else to the magic banana? Any other “remedies” other than time?

-Taco Bell is bad? The ground beef contains fillers? Are the chicken or beef strips marinated in something evil?

-Any other fast-food surprises? Other than the obvious (KFC, Popeyes, etc).

-I thought all grain based alcohols were a big no-no, especially the bourbons, whisky, and Scotch categories. Chopin Vodka is the only potato-based vodka readily available in the USA, but I really like Abosult and Grey Goose.

-I know about balsamic vinegar, and white pepper – but other surprise gluten containing compounds?

-I’m sure I’ll come up with some more…

I never knew that about bananas, is it the potassium? I don't eat them, they're too starchy for me, but I do have some salt subsitute that is essentially pure potassium. I had a lot of neurological issues and found taking B12 and a B complex was good. I had various buzzes and blips and things going on, feeling like insects were biting me, my intestines buzzed, weird, weird stuff. But that seems to be all gone now. I'm still taking the extra B's.

Taco Bell has very little on their menu that is safe, like rice and beans is all. I have a recipe for their ground beef and it has flour in it! Open Original Shared Link

I hadn't heard anything about white pepper or balsamic vinegar, as far as I know, if B. vinegar doesn't have wheat or malt/barley on the label it is ok. I think my white pepper is whole, unground stuff, can't think how they could manage to contaminate that.

Anyway, glad you've gotten the diet worked out! What a pain that would be to go through medical school like that!

[mamabear]

Hey GFMemphis!

I'm glad you're still here! I was afraid you were feeling taken advantage of and decided to lay low.

I really appreciate the fact that a medical professional is following a non-professional board and so has a much better understanding of the people coping with the disease, rather than the disease itself.

Thanks.

Thank YOU, Jestgar! I have been here all along....sometimes I'm too tired to make a coherent post, and then sometimes I lose my thread. I try to post on different parts of the forum,too......I enjoy this part of my day.....so far !!

[mamabear]

Hello there,

welcome to Russ and Ann! I have some questions and answers at the same time! I had muscle twitches in my calves, thighs and eye lids. After going glutenfree, they all disappeared. But there's another thing, that is almost gone. My right eyelid used to sink down, when I started to get tired. When this happened I wasn't able to open it on my own. After going glutenfree this disappeared as well (sometimes it's still there, but very very vague). Doctors told me, this was a nerve damage and I would never be able to get rid of it, but I did.

Now there's a question to Russ! A lot of times, when I get anasthetic, it is not working at all. Examples: My celiac was triggered during a tooth surgery, where the anasthetic didn't work. Another time I got stitches on my forehead, after busting my head open and the anasthetic they gave me, didn't work at all either.

Now, you mentioned eggs. When I eat eggs, I have strange gases, but I can't really say that I'm allergic or anything. Nor am I allergic to soy. Now my question is. Does this have anything to do with being celiac? Why does this happen? What can I do to resolve this problem? It annoys the heck out of me. I'm pregnant and I'm getting paranoid about the epidural not working. I have a friend that received an epidural and she had a c-section. She screamed, because she could feel the doctor cut her open. I already get horror visions.

Stef

Stef,

You didn't say if you were evaluated for myasthenia gravis?? If not, and the lid weakness/dragginess is happening.... you need to see a neurologist.

And you always hear the horror stories about delivery........I bet you'll be fine. I'll defer a definitive answer about anesthesia to Russ!

[lonewolf]

But there's another thing, that is almost gone. My right eyelid used to sink down, when I started to get tired. When this happened I wasn't able to open it on my own. After going glutenfree this disappeared as well (sometimes it's still there, but very very vague). Doctors told me, this was a nerve damage and I would never be able to get rid of it, but I did.

Sorry to break in on this thread, but I can't believe you had this problem. My dad had the same thing, but with both his eyes for the last several years of his life. He had to open his eye lids with his fingers. I'd never heard of anyone else having this. My husband (then boyfriend) only met my dad once before he died and that's what he remembers about that visit - how my dad kept having to "manually" open his eyelids. It seems like half the "weird" things that people on here have had, my dad had too. But of course none of us had ever even heard of Celiac back then.