Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


mushroom

Member Since 03 Jan 2008
Offline Last Active Private
*****

#862746 Gluten Withdrawal-Does Everyone Go Through It?

Posted by mushroom on 09 April 2013 - 08:49 PM

To the best of my knowledge, no one goes through gluten withdrawal unless they have a sensitivity to it (or I could be wrong since so few people eat truly Paleo and thus gluten free voluntarily, or at least we don't hear whether they suffer it).  It is possible to test negative for celiac via blood tests and yet still be gluten sensitive.


  • 1


#862708 Possible Dh- Need Some Advice

Posted by mushroom on 09 April 2013 - 06:07 PM

Welcome Daisy.

 

Did your dermatologist biopsy the rash itself? or the clear skin adjacent to a rash lesion?  If she biopsied the rash itself it was done incorrectly and would not find the gluten antibodies.

 

Did you have any celiac blood work drawn?  While those who have DH often test negative on blood work it should always be run nevertheless.  These are the tests which your primary care doctor can order:

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

I assume she is planning to check for food allergies with the "patch" test.

 

Can you describe your rash for us?  Does it form a head?  Does it blister and contain fluid?  Does it leave a purple scar?  These are often telltale signs of DH.  Does it hurt/sting as well as itch?  It could well be Dermatitis Herpetiformis but it is really hard to know.

 

I hope you can get to the bottom of it soon :)  and get some relief.


  • 1


#862318 I Am Having A Hard Time Wrapping My Head Around This...

Posted by mushroom on 07 April 2013 - 12:06 PM

Seasonal allergies like hayfever are, well, allergies.  Celiac disease is an autoimmune reaction in the body, causing it to  mistakenly attack itself.  You may not feel it at work in your body (silent celiac is not uncommon.  The sufferer of silent celiac may feel they are fortunate not to have symptoms and may well feel free to cheat, but actually they are at a disadvantage because they cannot tell when they have ingested gluten and are therefore harming themselves.)

 

And I say "harming" because whemever the body is attacking itself it is doing some damage.  It may be many years before you know what that damage is.  For me, I ended up with psoriatic arthritis, a combination of psoriasis and rheumatoid arthritis.  This is not because I willfully ate gluten knowing I shouldn't, but rather because I was undiagnosed all that time and did not know I was putting myself at risk.

 

It is not for us to tell you not to do something which you already know you should not be doing.  I believe you have to take responsibility for your own body and your own health.  You may follow medical advice, or choose not to, at your own discretion.  But before you choose to reject it I would suggest that you do a lot of reading about celiac disease and make an informed decision.  If you wish to risk major complications down the road a ways, that must be your decision alone.  You have already told us you don't listen to scare tactics from others so I won't give you any more.  But I do suggest you educate yourself about the risks you are taking.

 

We have all been through the gluten withdrawal, the giving up the things we love (believe it or not, if you do decide to eat gluten free you will find other things you love just as much, and will expand your food horizons in a healthy fashion), and coped with the difficulties a celiac diagnosis brings.  I do admit to you it must be harder when you are not receiving any instant feedback that what you are doing is the right thing.  For most of us, the gluten = pain and suffering is a strong reinforcer to stay on the straight and narrow :)    Nevertheless, it is what it is, and so long as you continue to eat gluten you continue to play with fire.

 

I wish you good health and the strength of will to take care of your body.   Oh, and welcome to the forum. :)


  • 1


#862248 The What's For Dinner Tonight Chat

Posted by mushroom on 06 April 2013 - 07:43 PM

Hubs cooked dinner last night. He made a mushroom gravy with shallots to smother the swedish meatballs and we were both at a loss as to the sweetness of the gravy.  I accused him of using powdered sugar by mistake to thicken it but he claimed not.  I had recently introduced him to the cannned condensed milk I keep in the pantry for run-out-of-milk emergencies (along with the boxes which had all been used up :rolleyes: ) and was unaware he had used that since we had milk in the fridge.  However today, I opened the refrigerator and there was an opened can of SWEETENED condensed milk :lol: -- sweet gravy explained!!  It was not overly sweet wine or overly ripe shallots or any of a hundred other explanations proffered :P :lol:  It was an interesting touch to a savoury meal.


  • 1


#862107 Newbee To This...

Posted by mushroom on 05 April 2013 - 07:52 PM

Hello John, and welcome to the board.

 

There is such a lot to explain, where to start?  Best for you to start by reading as much as you can on this forum, starting with the Newbie 101 thread at the beginning of the Coping section.

 

A brief synopsis.  You have been making autoimmune antibodies to gluten due to an inherited gene predisposition, which have destroyed the lining of your small intestine, allowing foods in a partially digested form to get into your bloodstream and making you very sick.  You blood test score measures the number of antibodies, and the fact that your doctor could visually see the damage rather than having to rely on the microscope looking at the biopsies means that the damage is quite severe and will quite possibly take some time to heal.

 

It would be helpful to know what the treatment was.  Was it maybe for H. pylori, for the ulcers?  These are very important to treat.  He obviously also tested you for nutritional deficiencies if you have to take lots of vitamins.  This is because the destruction of the lining of your small intestine causes you not to be able to absorb nutrients from your food and you therefore become deficient in these essential nutrients -- essential because they are required for the proper functioning of the body.  This is especially true in bonebuilding.  You are obviously deficient in Vitamin d (common in celiacs) which is a necessary nutrient for building new bone.  Without it your bones become weak and fragile.  The good news is that you should be able to build new bone with the proper nutrition.

 

The blood you were vomiting could have been coming from the ulcers if they were severe.  The passing of blood from the rectum could be from an anal fissure which is not uncommon.  Yes, passing of blood (from either end) needs to be watched closely.  Were you given a colonoscopy in addition to the endoscopy?  This would rule out any other bowel condition.

 

This is just a capsule answer to your question.  If you have more specific questions, do ask, but do do some reading on here where you will find answers to lots of questions you may have.  It is an invaluable resource.

 

Again, welcome, and I do hope you are soon feeling much better. :)


  • 1


#861214 No Blood Screening Results Of Dh Test Results But Drugs Seems To Be Helping...

Posted by mushroom on 30 March 2013 - 12:03 PM

I'm glad the Dapsone is giving you some relief. but sorry that your biopsy was done incorrectly.  Is there any chance you can print out information from the webon how to do it and go back and have it redone?  I ask this, because this is your best shot at diagnosis.  It is unfortunate that those with DH frequently do not test positive on either blood tests or intestinal biopsy because all their antibodies are concentrated in their skin tissue. :(

 

Incidentally, it's probably not the chlorine.  Heat always seem to drive any skin condition insane


  • 1


#860829 Quinoa Oh No-a Should Have Said Whoa To That Quinoa

Posted by mushroom on 27 March 2013 - 12:57 PM

Remove it for awhile - but do trial it again at some point -- will likely be a very long time before I try it again, but I will eventually.

I don't think I will :ph34r:


  • 1


#860658 18M Old - With Genetics Against Her

Posted by mushroom on 26 March 2013 - 11:25 AM

Thank you for answering my questions!  That helped enormously.  It would appear that based solely on a negative tTG IgA they think they have completely ruled out celiac disease :huh:   Can one of them be convinced somehow that they should run both the IgA and IgG versions of the DGP (deamidated gliadin peptide)?  Before we go any further?  I am aware that because of her age this could well be negative also, but it is the most likely to pick up celiac in its early stages if it were in fact to be celiac disease, being very sensitive and very specific.  And yes, if you were to test positive it would most certainly help your daughter's case.

 

Awesome that you were able to get an appointment for yourself so quickly.  As prickly says, you must be very firm and don't let yourself be bossed around.  I would go so far as to write out what you want to say and practice saying it a few times before you go (no, don't give the paper to the doctor or read from it!  That is why you practice first :) ).   Watch for the little tricks they use to sidetrack you.  I would say, would you let me complete my case and then ask me questions.  I would do this with all the doctors, actually.


  • 1


#860579 18M Old - With Genetics Against Her

Posted by mushroom on 25 March 2013 - 07:30 PM

April, I sat down and read your daughter's thread in its entirety today, which I have not done in the past because you were receiving good advice from good advisors :)   I could not believe this whole saga has been going on for seven months practically unchanged except for the eventual elimination of soy (and apparently? with that the really hard belly).  Although I keep seeing the title of your thread popping up.  You must be at your wits' end, as I am with mine having read it all.  Wouldn't it be great if you could get her pediatrician, her GI and her allergist all together in the same room talking about what is wrong with your daughter and developing a united plan of attack.  It seems that these little fiefdoms are impeding your daughter's progress rather than helping it. :unsure:

 

I do have to admit to having a headache now that I am through it all, and that is probably preventing me from synthesizing the following information.  And I don't think my head will survive a reread.  I know she has not had endoscopy with biopsy to try to figure things out and understand the reasons, although it may be time for this step.  But has she had a complete celiac panel, running both the IgA and IgG versions of all the tests after having been on a gluten diet for 8 weeks?  If the answer was yes, were all of these tests negative?  I know she has had low Vit.D and B12 which are very closely related to celiac.  Are her levels normal now they are being supplemented or are they still low?  Has she had an ultrasound exam for impacted stool -- the diarrhea often squirts around the edges of impactions?  Is she actually improved in any way from August when you first started the thread?  Have you ever had the celiac panel after being on a full gluten diet for 8 weeks?

 

Perhaps if you could set out the answers to these questions it might help us all (and certainly me :wacko: ) get our heads around the issues.


  • 2


#860408 Just Diagnosed....not Really Sure What To Do Now.

Posted by mushroom on 24 March 2013 - 05:52 PM

I hate to be a Debbie Downer, but unless your doc is the exception to the rule, don't get your hopes too high about the help you will be offered.  Many of them will refer you to a dietitian who may, or may not, know more about celiac disease than you do.  Or he may tell you to do what you have done and consult Dr. Google :D   Nutrition barely gets a mention in medical school, thus most doctors will tell you your problem is not food-related :(   At best they will refer you to an allergist as if all food problems are allergies. :rolleyes:


  • 1


#860278 Just Diagnosed....not Really Sure What To Do Now.

Posted by mushroom on 23 March 2013 - 06:56 PM

Just to add another welcome to the world of gluten free :)

 

Yes, the supermarket meltdown is practically a mandatory rite of passage ~~ the full realization of "the reading of labels".  So it's generally better when you first start out not to get too involved with processed food and labels - just do the basics like pasta, bread, baking mix until you feel better able to cope.  And your intestinal tract will probably thank you too, for not having to adjust to too many different kinds of foods that it is not used to, all at once, especially while it's still healing.

 

As soon as you can find the time, remove everything from your pantry and check for gluten.  Give opened food to friends; you may want to consider a food bank for unopened stuff, or a charity of your choice.    Only put back in the pantry things that are gluten free.  Oh, wait a minute, you didn't say whether or not you were going to make your house gluten free.  It does avoid a lot of potential cross-contamination to do so, and your husband will find out what a good cook you are when he can't tell if it's gluten free or not :)   He can eat gluten out of the house and eat gluten free at home (so long as he brushes his teeth before he kisses you. :P


  • 2


#858407 I Hope The Derm Has Answers For Me!

Posted by mushroom on 13 March 2013 - 12:54 PM

It is rare to find a dermatologist who is so familiar with DH that he is willing to diagnose without doing a biopsy; you may be one of the lucky (or unlucky :P ) ones.  Certainly, from your pictures I would think it is DH too, from all the other pictures I have seen from diagnosed posters.  The fact that you have the other symptoms also, and an official MD-stamped diagnosis, should put you at rest that this is what you have.

 

Yes, all first degree relatives should be tested for celiac disease every 3 years.


  • 1


#858398 I Hope The Derm Has Answers For Me!

Posted by mushroom on 13 March 2013 - 11:39 AM

You do not need a GI doctor to test for nutritional deficiencies, so they must be considering doing additional celiac testing, like a scope to check for intestinal damage.  Do tell the GI you are already gluten free; however, some of them don't know this affects the test results or will tell you to eat it for a couple of weeks which really isn't enough.  At any rate, you say you will not eat it, so....

 

Does it really make any difference if experts disagree about whether DH is celiac or not?  You know you cannot eat gluten and DH is usually very gluten sensitive.  You can honestly tell people you are diagnosed celiac and can't eat gluten.  Is it an intolerance to gluten?  Yes.  Is it celiac?  Generally accepted as yes.  Many consider celiac disease to be just a different step on the gluten intolerance ladder.  So there is really no such thing as "just" an intolerance.  We still do not know what harm a non-celiac gluten intolerance does.   It should be treated with as much respect as celiac disease, aspecially if associated with (celiac?) DH.  I would think just the pure hell of this rash would be enough to take the "just" out of your diagnosis. :)


  • 1


#858216 They Are Refusing To Test For This Based On My Ana, What Do I Do?

Posted by mushroom on 12 March 2013 - 11:25 AM

They say my ANA is fine so they aren't going to do the test. 

 

Are you saying they won't test for celiac because your ANA is fine?  This is a nonsense if so.  ANA does not test for celiac.  While it is a general autoimmune screen, it is designed to detect connective tissue AI disorders like SLE, RA, Sjogren's, etc.  It tells you nothing about celiac disease.


  • 2


#858095 Dermatitis Herpetiformis ( And Other Rashes)

Posted by mushroom on 11 March 2013 - 06:45 PM

Well my biopsy was neg after learning how it should be done I realize that it was done wrong. Now I am not sure what to do this rash is unbearable it comes and goes and has left scars is this typical for dh? Would really love a diagnoses but if I don't get one soon I think I may go crazy! I am planning on going on the gaps diet to see if it helps
What other test should I ask my dr for

 

 

Slaps palm to forehead!!  Can't believe yet another derm. screwed up a DH biopsy!!!  Two minutes with Dr. Google would tell them how to do it.....  I am so sorry.

 

And let me guess, you took his advice and stopped eating gluten, so now testing is not available to you without going back on gluten for six weeks.  And I am afraid that is the very sad truth of it.  For any of these tests you do have to be eating gluten for the results to be valid and accurate.  Skin biopsy, celiac blood panel, endoscopy with biopsy.  These are the three ways of medically/scientifically diagnosing celiac.  The only other way is adherence to the gluten free diet (complete adherence) and a resolution of symptoms while gluten free.

 

Yes, the DH can come and go and it does leave scars, often angry purple ones to start with but then they fade to white.  And the DH can linger long after you stop eating gluten, unfortunately.  It is the slowest of the gluten symptoms to resolve, it seems (apart from some of the neurological signs).  It can also be made worse by iodine and you may be one of the iodine sensitive folks.  Trying to keep iodine out of your diet as much as possible can help to clear up your symptoms.  Have you been on the DH thread here on the forum?  There is a lot of useful information there.

 

I hope you are able to get things under control soon and start feeling better.  Best wishes! :)


  • 1