Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Making A Comeback

Mnicole1981

Recommended Posts

Mnicole1981 Enthusiast
Mnicole1981
Posted

http://s1067.photobucket.com/albums/u432/MochaNicolatte81/?action=view&current=IMG_20120503_092736.webp

Making a comeback. Great! Ugh..

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Sorry. That is so miserable. I don't really know alot about DH, just wanted you to know I'm thinking of you.

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

Sorry. That is so miserable. I don't really know alot about DH, just wanted you to know I'm thinking of you.

Thank you. I have read that DH is more uncommon in African- Americans, but I have bern going through the boards and realized that it really isn't.

pricklypear1971 Community Regular
pricklypear1971
Posted

I think DH is under diagnosed in EVERY population. It's just flat-out underdiagnosed.

I'm sorry it's coming back. It hurts like the devil sometimes.

I irritated my finger spot last night and it's itchy today. Grrr. I get it almost healed then wham!

squirmingitch Veteran
squirmingitch
Posted

I'm so sorry it's back. Darned stuff reminds me of the movie Poltergeist where the little girl says "it's baaaaccckkkk". Every time you think it's gone --- here we go again.sad.gif

Unfortunately it's going to keep doing that or heaven forbid STAY until you can go gluten-free. And then it can still come back off & on.

And yes, it's under diagnosed in all populations & likely to remain so as long as docs don't learn to recognize it or refuse to consider it. We had an African - American male on here not too long ago whose doctor said he couldn't possibly have dh b/c he was African American.

pricklypear1971 Community Regular
pricklypear1971
Posted

I'm so sorry it's back. Darned stuff reminds me of the movie Poltergeist where the little girl says "it's baaaaccckkkk". Every time you think it's gone --- here we go again.sad.gif

Unfortunately it's going to keep doing that or heaven forbid STAY until you can go gluten-free. And then it can still come back off & on.

And yes, it's under diagnosed in all populations & likely to remain so as long as docs don't learn to recognize it or refuse to consider it. We had an African - American male on here not too long ago whose doctor said he couldn't possibly have dh b/c he was African American.

After reading the studies/med write ups re:DH I've noticed they give a 90%+ number for people who have DH are dx via biopsy - and these are the people they use in studies.

It absolutely infuriates me to read that KNOWING how many people 1) can't get biopsies attempted 2) get incorrect biopsies 3) are already gluten-free when biopsied )which falls under incorrect, I guess).

I mean REALLY. If the dx criteria for DH is the effin' biopsy (like they try to make it for celiac disease) and the effin' docs rarely biopsy the effin' rash THEN WHO THE HECK KNOWS???? And since they estimate only 10-25% of Celiacs are DH our numbers, symptoms, problems, and representations are sorely UNDERREPRESENTED in Celiac research.

I swear they've only approached the tip of gluten involvement in skin diseases/problems.

Ok, I'll stop venting now. I'm over it.

Di2011 Enthusiast
Di2011
Posted

I think a bit of venting is warranted on this topic.

I live in Canberra, Australia. Since January I've been working in a suburban supermarket. I would say every second or third day I see someone who has fairly obvious signs of possible DH. With head to toe DH the past year I have seen it in all its myriad of forms on different parts of body and different stages of its progress so I reckon I would recognise it anywhere on anyone.

The only person I spoke to about it was a young woman (probably early 20s) who had really, really obvious DH. And a pretty bad case of it from what I saw of it. She appeared to be a well adjusted (I'm guessing a uni student - there are many in the area), sober type. So this is how the conversation went:

Me: wow your skin is like mine (and I showed her what was under my sleeves)

Her: Yeah.. my skin has always been bad

Me: It is from eating gluten. I'm going to write down the name of this condition. You should google it. Read lots about..

Her: (silence) okay bye

I really hope that she did look into it but I will never know. I only wish that my "ingrown hairs", mild adult acne (I'm 39), itchy back (all of which I've always had) had been recognised for what it is when I was young.

I thought I was just an itchy scratchy type, overweight because I was lazy but didn't eat much ever, constipated and bloated because I didn't eat enough fruit/fibre, should have eaten breakfast more often (I always avoided breakfast, sandwiches, didn't like Italian - pasta/pizza.

-sigh-

I'm not the type who usually laments or regrets but on this issue I do. How many people are out there living their first 19, 29, 39 .. 59 years thinking this stuff is "just me" or "my fault"?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


itchy Rookie
itchy
Posted

We should all be more active in our national coeliac associations, which would seem to be the best avenue for getting more attention for this issue.

I only follow the DH threads. Is there another area on this message board where 'political' discussions on issues relating to coeliacs takes place?

Mnicole1981 Enthusiast
Mnicole1981
Posted
  • Author

I know what you mean. If I had known being lactose intolerant and having to go on soy milk as an infant, asthma, being overweight all my life, GERD, a hiatal hernia, and constant sinus infections, would end up being potential celiac disease, I would have looked into it more.

squirmingitch Veteran
squirmingitch
Posted

I know what you mean. If I had known being lactose intolerant and having to go on soy milk as an infant, asthma, being overweight all my life, GERD, a hiatal hernia, and constant sinus infections, would end up being potential celiac disease, I would have looked into it more.

We can all look back with 20/20 sight & see the things that were telling us but don't be too hard on ourselves ---- we didn't have computers then. And people listened to & took the doctors word for everything then.

squirmingitch Veteran
squirmingitch
Posted

We should all be more active in our national coeliac associations, which would seem to be the best avenue for getting more attention for this issue.

I only follow the DH threads. Is there another area on this message board where 'political' discussions on issues relating to coeliacs takes place?

Try one or both of these:

https://www.celiac.com/forums/forum/15-celiac-disease-publications-publicity/

https://www.celiac.com/forums/forum/15-celiac-disease-publications-publicity/

and this might suit:

https://www.celiac.com/forums/forum/22-celiac-disease-support-groups/

Di2011 Enthusiast
Di2011
Posted

We should all be more active in our national coeliac associations, which would seem to be the best avenue for getting more attention for this issue.

I only follow the DH threads. Is there another area on this message board where 'political' discussions on issues relating to coeliacs takes place?

Okay ... another vent. This one makes me really mad.

I'm in Australia. Our Coeliac association only accepts members who have a doctors letter confirming coeliac diagnosis. So how many of us aren't in the association ?? Perhaps we need a Undiagnosed Coeliac Association (UCA).

itchy Rookie
itchy
Posted

I think you should be angry.

It would appear that the Australian association is guilty of the same attitude that many physicians have-that many people claiming to be coeliacs are 'hypochondriacs' or whatever.

It's a paternalistic attitude.

But one can still lobby the association anyway. If they don't respond in a positive way they are probably useless in any case, and being in the association would be a waste of money.

The Canadian association recently took up an issue I had with Air Canada in flight meals, and didn't question the fact that I wasn't a member. I thought that was good of them.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    3. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    4. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
    5. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,256
    • Most Online (within 30 mins)
      7,748
    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.