0
tinpins

Dermatitis Herpetiformis ... My Journey

Rate this topic

Recommended Posts

Well, I have had a super busy week and lost track of the postings! Soon, but not soon enough, I will be on summer holidays. For now though, its report cards and the chaos of the end of a school year! 

Anyways, CT scan results:

 

-mild cerebral atrophy...doesnt sound good to me, especially becuase I am only 35! Any insight on this would be appreciated! 1 thing I do know is that it can happen prematurely due to lack of B12 and can regenerate. My B12 results..342...Doc says 200 is severe B12 deficiency and anythong over 400 is normal, 800 being a good, average number...mine is borderline deficient. That was tested with supplements in my system. 

 

ok back to CT results: 

    -enlarged jugular bulb

    -rt jugular bulb diverticulum...basically no bone left inbetween the jugular bulb and the middle ear.

 

any insight??? So weird, so rare and so confusing! 

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


the jugular so close to the ear may be the cause of pulsatile tinnitus.  The fact that you didn't stop the supplement at least 4/5 days before testing, negates that testing.  large doses of B12 appear to be in your future!

Share this post


Link to post
Share on other sites

the jugular so close to the ear may be the cause of pulsatile tinnitus.  The fact that you didn't stop the supplement at least 4/5 days before testing, negates that testing.  large doses of B12 appear to be in your future!

I would have stopped but I actually only asked for the B12 blood test on my way to the clinic prior to my CT bloodwork. I am going to increase my B12 fthrough supplements and see if I notice a difference of any kind. 

 

BTW I think I ate non gluten free soy sauce last night. I broke out this morning in various itchy spots. Holding onto hope that they dont progress to a full blown DH breakout.

Share this post


Link to post
Share on other sites

This is well worth watching ... "Gluten and Autoimmunity Explained in 20 Minutes"

 

Share this post


Link to post
Share on other sites

That is EXCELLENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Thank you!

 

And this really should be posted in this forum so the rest of the celiac.com community can benefit from it:

http://www.celiac.com/gluten-free/forum/17-celiac-disease-related-disorders-research/

Share this post


Link to post
Share on other sites

That is EXCELLENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Thank you!

 

And this really should be posted in this forum so the rest of the celiac.com community can benefit from it:

http://www.celiac.com/gluten-free/forum/17-celiac-disease-related-disorders-research/

 

Can you do that please and thank you : ) You know where it belongs  : )

Share this post


Link to post
Share on other sites

YVW.

Share this post


Link to post
Share on other sites

YVW.

 

Thank you ... and here's another video that is worthwhile watching.

I'll post this over on the other forum too.

 

Second Opinion: Celiac Disease

 

Share this post


Link to post
Share on other sites

Well, I have had a super busy week and lost track of the postings! Soon, but not soon enough, I will be on summer holidays. For now though, its report cards and the chaos of the end of a school year! 

Anyways, CT scan results:

 

-mild cerebral atrophy...doesnt sound good to me, especially becuase I am only 35! Any insight on this would be appreciated! 1 thing I do know is that it can happen prematurely due to lack of B12 and can regenerate. My B12 results..342...Doc says 200 is severe B12 deficiency and anythong over 400 is normal, 800 being a good, average number...mine is borderline deficient. That was tested with supplements in my system. 

 

ok back to CT results: 

    -enlarged jugular bulb

    -rt jugular bulb diverticulum...basically no bone left inbetween the jugular bulb and the middle ear.

 

any insight??? So weird, so rare and so confusing! 

 

 

I had a bit of shrinkage show on my brain MRI.  Doctor told me they see this with Alzheimer's (my Mother had this) and it is a bit scary.  He also mentioned MS but . . . hey, I AM NOT a doctor.  You should ask him to explain every detail of your scans.

 

I tell each doctor I need an explanation in 'normal' terms.   :rolleyes:   We go line by line and until I'm like . .  ok, I understand.  I had an MRI show that all of my brain was functioning at 1/2 level.  When the doctor told me that, I reached over and slapped his arm and said, "Right . . . "  as I laughed at him.  He looked at me and said, "I'm serious but we won't worry about that, it could be a machine malfunction."   

 

Take charge of your patient records. . . . ask questions ! ! !

Share this post


Link to post
Share on other sites

I had a bit of shrinkage show on my brain MRI.  Doctor told me they see this with Alzheimer's (my Mother had this) and it is a bit scary.  He also mentioned MS but . . . hey, I AM NOT a doctor.  You should ask him to explain every detail of your scans.

 

I tell each doctor I need an explanation in 'normal' terms.   :rolleyes:   We go line by line and until I'm like . .  ok, I understand.  I had an MRI show that all of my brain was functioning at 1/2 level.  When the doctor told me that, I reached over and slapped his arm and said, "Right . . . "  as I laughed at him.  He looked at me and said, "I'm serious but we won't worry about that, it could be a machine malfunction."   

 

Take charge of your patient records. . . . ask questions ! ! !

 

As one of the guests pointed out in the Second Opinion video I posted above ... this is the chameleon of diseases. And it manifests itself in many different ways. We are lucky if we find a doctor who has the time to explain things and I always, always get copies of my medical notes from each visit. I keep a file of my own medical history. That comes from going back to the same doctor/s and having my records gone missing!

 

The other thing I'm finding really interesting is the book my dietitian recommended:

 

"How doctors think" by Jerome Groopman

Share this post


Link to post
Share on other sites

As one of the guests pointed out in the Second Opinion video I posted above ... this is the chameleon of diseases. And it manifests itself in many different ways. We are lucky if we find a doctor who has the time to explain things and I always, always get copies of my medical notes from each visit. I keep a file of my own medical history. That comes from going back to the same doctor/s and having my records gone missing!

 

The other thing I'm finding really helpful is the book my dietitian recommended:

 

"How doctors think" by Jerome Groopman

 

 

I will not accept a doctor not taking the time to explain to me.  I am paying the bill (or my ins is) and I've never met one that would not sit down with me.  I have seen a minimum of 12 doctors since February of this year and not one has not been denied an explanation and of course, always give me a report.

 

I worked for 6 years at a hospital, 3 years with a group of doctors in an IPA, 7 years in politics . . . when you have met President Reagan, VP Quayle, many US Senators (worked for one) and of course all the state politicians.  I am not intimidated by nary a person.   :)   I write this with a HUGE smile on my face.  I interviewed a lady for IT at the IPA and was really impressed with her CV.  The president (MD) of our group just laughed at me.  He said, "What impresses you about her? I want to know as no one has bowled you over yet."   We had a good laugh about that one.

 

Doctors are normal people that have chosen to commit to caring for others. . .  BTW, I was trying to encourage Mamat78 to ask questions.  It is our body, our money and we need educated answers from our caregivers.    :D

Share this post


Link to post
Share on other sites

I think I need to clarify my statement in post # 162 from my perspective. I've nursed in three different countries and I don't live in the US. It has taken me 40 years to get a diagnosis. I have simply shared my journey and my experience/findings. 

Share this post


Link to post
Share on other sites

Yes, we get it. Unfortunately :).

Dh is life altering. I changed my life to accommodate that rash. It effects your body, mind....disfigured you, and makes you cry.

Most doctors don't recognize it, and fewer can get an accurate biopsy from it. Often you've been treated with steroids for "mystery rash", so blood and skin tests can be falsely negative, IF a doctor was suspicious.

You're left with setting your jaw and plowing forward with gluten-free if you're lucky enough to figure it out on your own.

So, we get it. Feel free to vent and scream and ask questions. I sincerely hope this is your answer because chronic mystery skin diseases can be horrible to live with.

Please do NOT underestimate the power of a gluten-free and low iodine diet in the beginning, if this is dh. High iodine foods made my rash flare hideously, even while strictly gluten-free. Not everyone is as sensitive to iodine as I was - and quite frankly, that sensitivity was enough to "seal" my dx...

Good news, if you are iodine sensitive you may find it a drug-free way of controlling the rash. I was strictly low iodine two weeks, then started adding back slowly. I found I was more sensitive to certain high iodine foods - egg yolks, carrageenan, asparagus, potatoes. Everything else I could tolerate quite well. I think iodine is cumulative - so I ramped up intake over 3 months, and by then I was able to eat anything but gluten.

 

Back in 2010 I was having the "leaky gut" symptoms. It was nonstop. I just couldn't figure out what was causing it. Finally in 2011 I went to a gastroenterologist and had to have some tests for a clotting disorder I was taking Warfarin for before could have an endoscopy and colonoscopy done. I had to be off of those medications prior to and resume them after the procedure. It took until April for those tests to get back and come to find out I never had the genetic clotting disorder I was treated for 20+ years. I had the colonoscopy in June 2011 and they discovered an anal polyp the size of a tennis ball. It took three colonoscopies and a major surgery to remove the polyp and its stem. During my journey a retired doctor made a comment that many of my symptoms sounded to her like Celiac Disease. Made sense to me so at the end of 2010 I started a rigid gluten free diet without having tests done. Some of my symptoms did clear but not all of them since the polyp was partially to blame at the very least. The GI guy really did not believe that I was Celiac but was unwilling to say for certain that was the case. Around March of 2012 I ate a cauliflower salad at a restaurant and I thought it might have bread crumbs on it. Nothing happened but I still proceeded with caution because I was so much better and I didn't want to mess with success.  

 

Finally I ate a sandwich and nothing happened. So, gluten became my friend again. Then earlier last month I was going through a very stressful period in my life. I noticed my joints were swelling. I could hardly even walk. I was having trouble breathing. My elbows would hardly allow me to lift anything. I ached at night. I couldn't sleep. But one thing I didn't have was the "leaky gut" stuff like I did in 2010-2011. Then one Saturday night we ordered in pizza and I drank a beer with it and it was so good tasting on a hot Saturday night I drank another. I woke up with a rash that I thought at first was scabes or bedbugs. They were SO painful. Sunday night we had Rigatoni. Monday morning my rash had spread and continued to do so. One thing I noticed was the rash was much worse every other night (the nights I wash my hair). I went to the doctor and he prescribed cortisone cream. It just kept spreading and finally turned into a mass of sores and ulcerations that oozed and blackened. A doctor came into where I worked and told me to take antihistamines for it, both Pepcid and Benedryl. I was so much better after doing so. But the other thing I did was start eliminating gluten because I thought it would help my joints because they were still really bad. Then the condition got SO bad I went to the emergency room and the doctor ordered prednisone orally. I finally got relief and slept that night. He told me to go to the clinic the next day. That same night when I washed my hair I noticed that my legs burnt a bit. Not like before but they burnt. Finally at 3AM I got up, read the shampoo bottle which read, HYDROLYZED WHEAT and I showered and shampooed my hair with another product and was able to sleep again.

 

I went to the doctor that told me to take the histamines and she brought in another doctor to look at my legs, arms, etc. and diagnosed this as vasculitis. They told me at the time it could be idiopathic and I might never have this happen again but I had a feeling all along this had to do with the two Coors Light's I drank the Saturday prior to this coming on. I kept addressing that with both doctors. I had a battery of lab tests and a skin biopsy. The doctor called me a couple of days later with the results of the biopsy and the available lab tests. The biopsy was diagnosed as Vasculitis and all of my other tests were within normal range except for my white blood count which was elevated because of taking prednisone. I took large doses of prednisone and am in the process of tapering off but there are remaining scars and deep ulcerations left on my legs and arms. Ten days after I went to the doctor I went back to have my biopsy stitches removed and for her to take a look at the ulcerations to make sure they weren't infected. She went over my lab work with me again and she said, "Oh, here is one that wasn't back yet when I talked to you! OMG, you are Celiac!" She brought in two doctors because at the top of the Celiac Panel it said, "NEGATIVE" but at the bottom there was a lab test that was WAY high it removed all doubt that I have the disease. Both doctors seemed to agree that when this test that was SO high is high then a person has Celiac. Then she proceeded to say that she did have to test me for Hepatitis B and C just because it was a prudent thing to do.

 

So, a couple of things. Why would the biopsy results be Vasculitis if it was in fact Dermatitis Herpetiformis? Can't they tell the difference? Are my joints better because of the Prednisone or because of the gluten free diet? Why do the Hepatitis Screens? Are they just making sure I don't have that on top of the Celiac? I'm just confused about all of this. I've been through the Gluten Free for a year and a half so I quickly resumed that. I bought new pots and pans, cleaned out the pantry, etc. donating gluten foods to food banks.... I just know I never ever want that rash again so I would really like to know for certain that it was the Dermatitis Herpetiformis. A year went by with me eating gluten with hardly any symptoms at all until I broke through with the horrible rash. How does that happen? You would have thought I would have reacted much sooner having been gluten free and then resumed eating gluten.

Share this post


Link to post
Share on other sites

Kelly, (((((((((((((((((((HUGS)))))))))))))))))))))))) You've been through hell. 

Okay, I don't have all your answers but I can say this ~~~ it seems there is some point when the GI symptoms of celiac stop or go down to mild and instead the rash kicks in. We read it over & over here. I myself, now know that I had the GI symptoms when I was a teen & then things seemed to go into remission for years probably aided by the fact that we didn't eat that much gluten as my hubs hates sandwiches,  we didn't drink, we were never very fond of cakes & cookies & so forth. But then I began to get the rash.

Not all celiacs end up morphing into dh ~~~ sometimes the celiac w/o the dh nearly kills as we have a # of members here who have barely survived the disease.

Your joints are likely better from a combo of prednisone & gluten-free diet. Are you off the prednisone now? I will warn you if you are not that the rash comes back with a vengeance when you discontinue the steroids. 

Share this post


Link to post
Share on other sites

so sorry that you had to deal with that outbreak! I totally connected with you when you talked about prednisone because I marched into my doc after 3 months of an outbreak and was willing to take anything that would possibly work. Prednisone was at the top of my list but at the bottom of my dr so I dealt with it for another 3 months before it finally cleared up. Glad that you finally have a diagnosis. I know for me, there were times where I would break out when I would eat gluten and then other times where things seemed fine so when I was trying to figure it all out, I wasnt sure of anything anymore. I am now gluten free for 6 weeks and not a rash to be found on my body. I know that I have been cc'd once or twice and within 2 hours, I am itchy from head to toe but it hasnt seemed to take hold and break out in a full blown DH rash but rather just itchy like an allergic reaction and then subsides through the night. 

Share this post


Link to post
Share on other sites

I will not accept a doctor not taking the time to explain to me.  I am paying the bill (or my ins is) and I've never met one that would not sit down with me.  I have seen a minimum of 12 doctors since February of this year and not one has not been denied an explanation and of course, always give me a report.

 

I worked for 6 years at a hospital, 3 years with a group of doctors in an IPA, 7 years in politics . . . when you have met President Reagan, VP Quayle, many US Senators (worked for one) and of course all the state politicians.  I am not intimidated by nary a person.   :)   I write this with a HUGE smile on my face.  I interviewed a lady for IT at the IPA and was really impressed with her CV.  The president (MD) of our group just laughed at me.  He said, "What impresses you about her? I want to know as no one has bowled you over yet."   We had a good laugh about that one.

 

Doctors are normal people that have chosen to commit to caring for others. . .  BTW, I was trying to encourage Mamat78 to ask questions.  It is our body, our money and we need educated answers from our caregivers.    :D

I have been away for a week or so but I am glad I came back to read! I will make an appointment tomorrow to see my doc this week. I am usually really good at asking questions but she skipped over the "mild cerebral atrophy" line and went straight to the actual cause of the pulsatile tinnitus, which she didnt even understand! I cant seem to find a whole lot of info on it either so I hope that the ENT doc has some answers. 

I did read, though, that low b12 can be the cause of cerebral atrophy. I am taking 2000mcg of b12 per day and am going to ask to be retested to see if my numbers have come up. 

 

THanks for your words about asking questions...if only I had time to fill you in on my experience with my current doctor (who is NOT dealing with my now) regarding me asking questions...that was a case of me knowing more than her and her not accepting that very well. I am not a pushy person but I broke down and told her I am tired of being told to suck it up...it did get me a CT scan which DID get me a starting point. :) 

Share this post


Link to post
Share on other sites

This was a symptom that was becoming more and more frequent for me towards the end of my gluten feasting life.

 

It's a most unpleasant and worrisome experience ... I'm sure you've seen this info but for anyone who hasn't, this gives a good overview of what it is:  http://www.tinnitus.org.uk/pulsatile-tinnitus

 

I have not had one episode of this since I went gluten free! 

I'm brand new to this. My children have been diagnosed as having a gluten sensitivity. My youngest daughter kept sending me info on celiac disease, thinking I should be tested also. I have had all the symptoms for 30-40 years, and no one has put it all together yet. I've been diagnosed with chronic fatigue syndrome, irritable bowel syndrome, have brain fog a lot, have had the blisters for DH that no one has figured out what it is until now. I have been hospitalized 4 times for oxalate kidney stones, not to mention the myriad of ER visits and ones that I have passed on my own. With at least 3 a year, I've had over 100 stones. My constipation and heartburn was not even considered as a symptom of celiac disease; I didn't have diarrhea, so of course it couldn't be celiac disease. Plus, my youngest child is a person with autism. (I've read mothers with celiac disease are 3 and 1/2 times more likely to have a child with autism.) Oh, yeah, and the incredibly poor teeth - just lost another one last week. So I wish that there was an easier way for doctors to put all of this together. Also, the health insurance issue. Having insurance with a $3000 deductible makes it hard for doctors to recommend running tests as they know it's really expensive. But right now I'm a bit annoyed that the puzzle pieces didn't come together years earlier and that there wasn't someone to help me before I got this old.

Share this post


Link to post
Share on other sites

I'm kind of wishing I knew how many "more" posts I need to make, doggone it! It's frustrating being new, realizing you have an autoimmune disorder, and can't really talk to anyone yet.

 

I have a question regarding dermatitis herpetiformis. Will doing a skin biopsy once the blisters are gone and are beginning to heal still work? I have lots of peeling skin left, but most of my blisters have disappeared. I think I have a few more starting on another finger as I can feel the itching starting. Does anyone have any information about this? 

 

Thanks so much!

Share this post


Link to post
Share on other sites

I'm kind of wishing I knew how many "more" posts I need to make, doggone it! It's frustrating being new, realizing you have an autoimmune disorder, and can't really talk to anyone yet.

 

I have a question regarding dermatitis herpetiformis. Will doing a skin biopsy once the blisters are gone and are beginning to heal still work? I have lots of peeling skin left, but most of my blisters have disappeared. I think I have a few more starting on another finger as I can feel the itching starting. Does anyone have any information about this? 

 

Thanks so much!

It needs to be a fresh outbreak

http://www.cureceliacdisease.org/archives/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed

Share this post


Link to post
Share on other sites

Why is it so hard to get a biopsy from dermatitis herpetiformis? I have read that positive blood work plus a diagnosis of dermatitis herpetiformis, preferably with a biopsy, is pretty much proof positive of celiac disease and that you then may not have to have an endoscopy of the small intestine. Have I missed something on this?

Share this post


Link to post
Share on other sites

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   6 Members, 0 Anonymous, 198 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Christina Kantzavelos
    Celiac.com 07/20/2018 - During my Vipassana retreat, I wasn’t left with much to eat during breakfast, at least in terms of gluten free options. Even with gluten free bread, the toasters weren’t separated to prevent cross contamination. All of my other options were full of sugar (cereals, fruits), which I try to avoid, especially for breakfast. I had to come up with something that did not have sugar, was tasty, salty, and gave me some form of protein. After about four days of mixing and matching, I was finally able to come up with the strangest concoction, that may not look the prettiest, but sure tastes delicious. Actually, if you squint your eyes just enough, it tastes like buttery popcorn. I now can’t stop eating it as a snack at home, and would like to share it with others who are looking for a yummy nutritious snack. 
    Ingredients:
    4 Rice cakes ⅓ cup of Olive oil  Mineral salt ½ cup Nutritional Yeast ⅓ cup of Sunflower Seeds  Intriguing list, right?...
    Directions (1.5 Servings):
    Crunch up the rice into small bite size pieces.  Throw a liberal amount of nutritional yeast onto the pieces, until you see more yellow than white.  Add salt to taste. For my POTS brothers and sisters, throw it on (we need an excess amount of salt to maintain a healthy BP).  Add olive oil  Liberally sprinkle sunflower seeds. This is what adds the protein and crunch, so the more, the tastier.  Buen Provecho, y Buen Camino! 

    Jefferson Adams
    Celiac.com 07/19/2018 - Maintaining a gluten-free diet can be an on-going challenge, especially when you factor in all the hidden or obscure gluten that can trip you up. In many cases, foods that are naturally gluten-free end up contain added gluten. Sometimes this can slip by us, and that when the suffering begins. To avoid suffering needlessly, be sure to keep a sharp eye on labels, and beware of added or hidden gluten, even in food labeled gluten-free.  Use Celiac.com's SAFE Gluten-Free Food List and UNSAFE Gluten-free Food List as a guide.
    Also, beware of these common mistakes that can ruin your gluten-free diet. Watch out for:
    Watch out for naturally gluten-free foods like rice and soy, that use gluten-based ingredients in processing. For example, many rice and soy beverages are made using barley enzymes, which can cause immune reactions in people with celiac disease. Be careful of bad advice from food store employees, who may be misinformed themselves. For example, many folks mistakenly believe that wheat-based grains like spelt or kamut are safe for celiacs. Be careful when taking advice. Beware of cross-contamination between food store bins selling raw flours and grains, often via the food scoops. Be careful to avoid wheat-bread crumbs in butter, jams, toaster, counter surface, etc. Watch out for hidden gluten in prescription drugs. Ask your pharmacist for help about anything you’re not sure about, or suspect might contain unwanted gluten. Watch out for hidden gluten in lotions, conditioners, shampoos, deodorants, creams and cosmetics, (primarily for those with dermatitis herpetaformis). Be mindful of stamps, envelopes or other gummed labels, as these can often contain wheat paste. Use a sponge to moisten such surfaces. Be careful about hidden gluten in toothpaste and mouthwash. Be careful about common cereal ingredients, such as malt flavoring, or other non-gluten-free ingredient. Be extra careful when considering packaged mixes and sauces, including soy sauce, fish sauce, catsup, mustard, mayonnaise, etc., as many of these can contain wheat or wheat by-product in their manufacture. Be especially careful about gravy mixes, packets & canned soups. Even some brands of rice paper can contain gluten, so be careful. Lastly, watch out for foods like ice cream and yogurt, which are often gluten-free, but can also often contain added ingredients that can make them unsuitable for anyone on a gluten-free diet. Eating Out? If you eat out, consider that many restaurants use a shared grill or shared cooking oil for regular and gluten-free foods, so be careful. Also, watch for flour in otherwise gluten-free spices, as per above. Ask questions, and stay vigilant.

    Jefferson Adams
    Celiac.com 07/18/2018 - Despite many studies on immune development in children, there still isn’t much good data on how a mother’s diet during pregnancy and infancy influences a child’s immune development.  A team of researchers recently set out to assess whether changes in maternal or infant diet might influence the risk of allergies or autoimmune disease.
    The team included Vanessa Garcia-Larsen, Despo Ierodiakonou, Katharine Jarrold, Sergio Cunha,  Jennifer Chivinge, Zoe Robinson, Natalie Geoghegan, Alisha Ruparelia, Pooja Devani, Marialena Trivella, Jo Leonardi-Bee, and Robert J. Boyle.
    They are variously associated with the Department of Undiagnosed Celiac Disease More Common in Women and Girls International Health, Johns Hopkins School of Public Health, Baltimore, Maryland, United States of America; the Respiratory Epidemiology, Occupational Medicine and Public Health, National Heart and Lung Institute, Imperial College London, London, United Kingdom; the Section of Paediatrics, Department of Medicine, Imperial College London, London, United Kingdom; the Centre for Statistics in Medicine, University of Oxford, Oxford, United Kingdom; the Division of Epidemiology and Public Health, University of Nottingham, Nottingham, United Kingdom; the Centre of Evidence Based Dermatology, University of Nottingham, Nottingham, United Kingdom; and Stanford University in the USA.
    Team members searched MEDLINE, Excerpta Medica dataBASE (EMBASE), Web of Science, Central Register of Controlled Trials (CENTRAL), and Literatura Latino Americana em Ciências da Saúde (LILACS) for observational studies conducted between January 1946 and July 2013, and interventional studies conducted through December 2017, that evaluated the relationship between diet during pregnancy, lactation, or the first year of life, and future risk of allergic or autoimmune disease. 
    They then selected studies, extracted data, and assessed bias risk. They evaluated data using the Grading of Recommendations Assessment, Development and Evaluation (GRADE). They found 260 original studies, covering 964,143 participants, of milk feeding, including 1 intervention trial of breastfeeding promotion, and 173 original studies, covering 542,672 participants, of other maternal or infant dietary exposures, including 80 trials of 26 maternal, 32 infant, or 22 combined interventions. 
    They found a high bias risk in nearly half of the more than 250 milk feeding studies and in about one-quarter of studies of other dietary exposures. Evidence from 19 intervention trials suggests that oral supplementation with probiotics during late pregnancy and lactation may reduce risk of eczema. 44 cases per 1,000; 95% CI 20–64), and 6 trials, suggest that fish oil supplementation during pregnancy and lactation may reduce risk of allergic sensitization to egg. GRADE certainty of these findings was moderate. 
    The team found less evidence, and low GRADE certainty, for claims that breastfeeding reduces eczema risk during infancy, that longer exclusive breastfeeding is associated with reduced type 1 diabetes mellitus, and that probiotics reduce risk of infants developing allergies to cow’s milk. 
    They found no evidence that dietary exposure to other factors, including prebiotic supplements, maternal allergenic food avoidance, and vitamin, mineral, fruit, and vegetable intake, influence risk of allergic or autoimmune disease. 
    Overall, the team’s findings support a connection between the mother’s diet and risk of immune-mediated diseases in the child. Maternal probiotic and fish oil supplementation may reduce risk of eczema and allergic sensitization to food, respectively.
    Stay tuned for more on diet during pregnancy and its role in celiac disease.
    Source:
    PLoS Med. 2018 Feb; 15(2): e1002507. doi:  10.1371/journal.pmed.1002507

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    Source:
    BMC Pediatrics

    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.

  • Forum Statistics

    • Total Topics
      110,490
    • Total Posts
      950,848
  • Member Statistics

    • Total Members
      81,103
    • Most Online
      4,125

    Newest Member
    GMonster
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thank you for all this info, I have had HS for 18 years but only started having DH symptoms after an unknown infection that caused a severe allergic reaction all over. I do use gluten free bread and oats as no one told me not to. But I might try removing these from my diet and seeing what happens. Do I gather then your only carbs are rice and potato.
    • You nailed it CDInSanDiego! I'll quote you the next time my kids complain. My husband was diagnosed with celiac in the late 1960s as a very sick young child. It was considered a rare childhood illness and he was crippled by eating gluten. He still feels very sorry for himself that he has been one of the very few who has had to be gluten free since that time when options were extremely limited and the "woe-is-me" mindset still lingers. So much so that he (along with our PCP) repeatedly refused to test our 10 children for it (since they didn't have the same extreme symptoms) so they could at least enjoy the gluten items he never could and avoid the social isolation that comes with the diagnosis. I started to research more on the Internet about celiac disease. Earlier this year, I decided to take charge when he was away and got them tested. 8 out of our 10 were diagnosed and so the household is now totally gluten-free. Needless to say, my husband often talked about how he felt sorry for himself (in front of the kids) being celiac yet insisted that the rest of us use regular (wheat) flour in the house to save money and so that the kids could enjoy regular gluten-filled treats and therefore he wouldn't 'burden' us with his health condition. He hates the term 'celiac disease' and much prefers to it to be referred to as 'celiac'.  His attitude about all of this has definitely had a detrimental effect on not only our children's health but also their perception of life with the disease (which they are slowly overcoming, almost entirely thanks to my efforts 😂).
    • With celiac we commonly have issues absorbing Magnesium, this can cause constipation...the kind that even a entire package of exlax does nothing for (been there). You need Natural Vitality Calm magnesium Powder, you can get it on amazon, start off with 1/4tsp (1-2g) in a tall glass of a warm beverage, raise the dose by 1/4tsp (1-2g) a day til you get loose stools then back it down that much.

      The bloat could be the constipation or it could be something else. What is your diet?
      We suggest a whole foods only diet starting off and you need to remove dairy, and oats, (the enzymes to break down dairy come from your villi which are damaged/destroyed by celiac and 10% of celiacs also react to oats) ]If your eating a ton of gluten free processed foods and not a whole foods diet your probably loading up on tons of starches and sugars. With celiac we are prone to intestinal issues like Candida, and SIBO. You can get tested for these or look at going to a low carb diet and seeing if the bloating stops after a few weeks. The Keto diet works great starting off as most recipes are gluten free, grain free, and very low carb so it helps with bloat and inflammation.
    • Thanks for the info and tips on beers. I don't drink a lot, but am always interested in options. I'll still have my occasional Guinness, as I love it, and have never felt anything but a warm glow after drinking one. As always, and with anything with gluten, your mileage may vary, just as mine does. Thanks again!
    • That's a good idea! When he was walking out of the exam room I told him that when it came time for him to need a doctor, I hope he got one with more compassion, understanding and a better bed side manner than he had...he just looked at me and walked out 🙄 As for dealing with blaming my weight and wanting me to be on happy pills, I assumed it was just me that was being told crap like that and that maybe my doctor was right. It wasn't until I stumbled across this site that I realized it wasn't just me dealing with those kinds of comments/crappy care from the doctor. 
  • Blog Entries

  • Upcoming Events