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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

DH Photo Bank
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dani nero    49

So far I've been controlling my rash through iodine and sals limitation.. but it would be possible that it "just happened" that the other irritants were limited at the same time (if it is eczema) which helped control the rash. I also get a coldsore-like blister in my nose that itches when I get a full rash outbreak by the way.

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dani nero    49

I'd like to upload a photo of my current (and severe) DH outbreak on my face and neck to show what the scarring can look like, but I don't know how to upload photos. How is this done? The photo is on my iPhone and filed in my download file on my computer. Any help?

Rosetapper are you diagnosed?

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squirmingitch    494

Holey moley. I never went to read about the dapsone before, I can see why most wouldn't want to take it. That is some dangerous stuff. I wouldn't take it either.

You've also explained why, though my rash is fading, it is NOT gone. I'm only 6 weeks gluten free. I guess I expected an instant response. Thanks for sharing that.

I'm thinking of testing with iodine. I was reading about the iodine patch test, I also think I'll get with my son and we'll both do some high iodine foods. We don't use iodized salt, I've avoided a lot of iodine because I was told it would aggravate my Hashimoto's by increasing thyroid antibodies. Not having had biopsies means we don't really know for sure, but maybe the iodine thing would answer questions for DS and me. Do you know much about the patch test?

I was thinking about doing the iodine patch test in the beginning but I did a lot of research on it & mostly IMHO, I think it's up for grabs or a lot of hooey. I don't know.

You COULD go low iodine. Here's a link:

http://www.thyca.org/rai.htm#diet

If things don't start clearing up in a week or less & certainly if no improvement is seen in 2 weeks then you may not have dh. Then there are a few who say iodine has no effect on their dh. It's a slippery thing dh is.

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rosetapper23    236

Dani,

I sent you a private e-mail (hope that was okay!), and in it I explained that I'm officially diagnosed with celiac, and my gastroenterologist told me that if he had seen my lesions even before diagnosing me with celiac, he would have told me that I had DH and was most certainly a celiac. My son gets these same lesions in the same locations when he is glutened, and he's officially diagnosed with celiac. The fact that gluten and iodine play a role in our outbreaks lends credence to the fact that we both have DH...and I personally believe that anyone who breaks out in itchy, blistery lesions when ingesting both gluten and iodine can be pretty much assured that they have DH. Just my personal opinion, though...

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rosetapper23    236

Okay...Dani helped me with a link that I can share with you.

This photo is not for the weak of heart--it might even scare small children. My photo shows many scars from a glutening on my face and neck that occurred more than four months ago, but which have continued to re-erupt due to the iodine in my thyroid medication. I think the episode is reaching the end, and most of the lesions are now simply scars. I have identical lesions/scars on the other side of my face, too. And, no, I do NOT leave the house without applying a special makeup to mask the lesions/scars. I use AirFlash by Dior, which is a spray-on makeup--I apply it with a small brush, though, to extend the product. It actually gives me an "airbrushed" look of near-perfection. Before I discovered it, I just wanted to wear a bag on my head. My DH was not diagnosed officially, but my celiac was...and my son experiences the same outbreaks in the same locations when he eats gluten. As I stated previously, my gastroenterologist told me that if he had seen the lesions before my diagnosis, he would have told me immediately that what I had was DH and that I most certainly have celiac. Dermatologists are so bad at recognizing DH and testing properly for it, I doubt that there are many DH sufferers who HAVE been officially diagnosed.

http://rainytown.se/images/external/dh_si/rosetapper_photo.JPG

As for how the blisters feel as they are emerging, mine first feel very itchy and swollen. Usually, a blister forms, and once that breaks, it becomes even more swollen and itchy. It also hurts all the way down through all the soft tissues (the way a herpes sore feels). Then let the peeling begin! My DH lesions peel every 12 hours like clockwork. They get covered by a fine, dry, dead-feeling covering that itches like crazy until it's peeled off. Only then does the skin feel smooth again, and the itching is lessened; however, the pain is still there. My mornings entail peeling off all the dry coverings so that I can apply my makeup; otherwise, the dead skin covering the lesions turns white and flaky (really disgusting). The peeling continues twice a day until it drops to about once a day after 2-3 months' time. The lesions get drier and less itchy, and eventually I end up with a dark scar--at first, it's purplish in color but fades to a dark brown color. As the eruptions become less frequent, they sometimes re-erupt under a scar, which requires that I use a sterilized needle to make a hole so that the blister can drain. Then the peeling starts all over again! It's a horrible cycle that is kept alive by the iodine in my thyroid medication. Before I had thyroid problems, I avoided iodine and was able to clear up DH outbreaks in less than a week after being glutened. Now, even the slightest gluten contamination can cause DH outbreaks that last four months or longer.

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DogWalkerNYC    18

Great idea!

Here's some of mine:

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-05-31at100910PM.png (emerging)

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-05-31at100910PM.png#!oZZ3QQcurrentZZhttp%3A%2F%2Fs1023.photobucket.com%2Falbums%2Faf355%2Fpinkgiraffe5%2F%3Faction%3Dview%26current%3DScreenShot2012-05-31at101025PM.png (older part of rash)

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-06-17at55008PM.png (this is what it looks like when it's 'inflamed')

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-06-17at55008PM.png#!oZZ2QQcurrentZZhttp%3A%2F%2Fs1023.photobucket.com%2Falbums%2Faf355%2Fpinkgiraffe5%2F%3Faction%3Dview%26current%3DScreenShot2012-06-17at54924PM.png (deflated and healing. sorry about the quality)

Brief history: I went gluten free Feb. '12 in an attempt to help relieve my GI 'issues'. Through the process I have discovered that being gluten-free has resolved *many* seemingly unrelated symptoms for me. I developed this rash after my first exposure to gluten (while gluten-free, approx. March '12). I get the rash in 3 different areas - it seems to be symmetrical. Responds well to low iodine and gluten-free.

I am not formally diagnosed as I am still searching for a competent doctor. I've got a lead on one (yay!) and plan to get the genetic testing done sometime in the near future. :)

Edited to add associated symptoms: the rash is *extremely* itchy - wakes me up! It tends to appear all at once - like a volcano eruption. Triggers that I am aware of: gluten, gluten cc, iodine, nighttime, hot water and hot weather.

the 3rd photo is pretty much what mine look like. I was calling them hives but I guess not. To me this is as good as a blood test.

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nikaboli    0

Hey everyone! This is a GREAT thread! I am not diagnosed with either celiac or DH....you can catch up on my intro here. :)

Just thought I would share a few pics here, since it COULD be DH

This is several days old, it is actually looking a little bit better today:

20120717_152801.jpg

20120717_152829.jpg

20120717_152842.jpg

20120717_152743.jpg

Here is this morning, after 1.5 weeks gluten free...although it is probably just coincidence. BUT, I haven't had a new blister in a few days now.

20120720_092343.jpg

20120720_092354.jpg

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davemu    0

This is a more recent picture of how the rash developed since the previous pictures. I now get reddish patches with dry flaky skin that appear before, with, and after the blisters. They don't show very well in the pic however due to being lubricated:

http://rainytown.se/images/external/20120622_135205.jpg

Any chance your symptoms fit with those of dyshidrotic eczema and not true DH?

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dani nero    49

Any chance your symptoms fit with those of dyshidrotic eczema and not true DH?

It does look a lot like it which is confusing. The rash however also appears in my nose and scalp, and reacted when I've overdosed on sals and iodine.

I don't know if I touched any metals which might contain nickel at the same time as a overdosing took place though.

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Azuremackey    0

I have lots of pics but I can't post them maybe because i am a new member?? I am diagnosed, Celiac and DH both by biopsy. If interested let me know.

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Azure - I had to open up a photobucket account and post pictures there and then post links to that site. I haven't been able to figure out how to post them directly here. I hope you can post, I'd love to see pics that have been confirmed by diagnosis.

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sisterlynr    7

I thought that a thread containing a collection of the different shapes and forms of DH could be helpful to people looking for something to compare their own rashes with. So go ahead and post your rashes here to help others find a point of reference. Please add associated symptoms and a short history.

I am however doubtful of this idea being a good one because some people might add photos that are not related and confuse people who are new to all this. I hope it will be ok and if it's not then it's ok to delete this thread and I apologize in advance ;-)

Since I haven't seen a rash that is milder than mine I think that it's actually a proper coincidence that mine is the first one :-)

These images were taken when the rash was in it's mildest form. It has sadly developed since these photos were taking, and gets pink swollen bumpy areas under the blisters. It is also starting to spread to the next finger and on the webbing between my fingers.

The rash used wake me up at night with a blistery, throbbing, itching, and burning finger when I used to consume gluten. Now it mostly burns whenever it shows up with very mild itching. The water in the blisters is clear.

http://rainytown.se/...0524_065253.jpg

http://rainytown.se/...0524_065311.jpg

http://rainytown.se/...0524_065505.jpg

Important: Please note that I'm self-diagnosed, meaning this rash is based on my own speculations based on my symptoms all put together.

I do not have a photo but had the same type of rash all over my hands in 2010. Both hands were covered and OMW, it bout drove me nuts! My doctor then did not know what caused it and gave me topicals but I never did have complete relief. I had to wear gloves to wash dishes and finally just told my family, no more dishes for me.

I recently started Dapsone as I have the blisters which I scratch, they pop, bleed, scab and leave scarring and it is all over my body. I see a great improvement and I am eating gluten free and trying my best to be iodine free. Dapsone has made this condition tolerable for me, not a total itch relief. My blood test was negative for Celiac but so was my cousin's. She did test positive with a biopsy via endoscopy.

I have the rash from scalp to sole of my foot. I really don't care if I ever have a "diagnosis of Celiac". I will continue the gluten free diet for the rest of my life. I see the difference in my skin and know what it takes to heal.

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mendylou    2

I commend you on not scratching them. At times I have to. I have some breakouts which are totally inflamed and raised as in a hive that are at least a quarter in size. They have tended to get smaller thru time but every now & then I get a really big eruption that is also more tender and much harder under the surface of my skin. They are usually much more painful. I have been gluten free for 2 yrs this Dec. Of course, one never knows when cc will happen. I will usually have a reaction if I eat out even though I am very careful. The same is true if we have a family get together & I try to be very careful. I never realized it would take this long, but the longer I am gluten free the quicker I get a reaction. Mine usually take quite a while to disappear. In the past 2 years of gluten-free there has never been a time when I have not had eruptions. My skin is always broken out.

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mendylou    2

For most of us with DH we have not been able to find satisfactory dermatologists who understand our condition. i have been researching sites for 2 years and this is by far the best place to go to to get info & advice. From people who share the same issues & can't find answers anyplace else. People who do not have this condition do not understand it nor do they know how we feel or react. Their info is only based on info they have read about or receive from others. I have had the most helpful info here. For those not positively diagnosed but know what the problem is we would NOT want to go thru the suffering that eating gluten would do to get a diagnosis.

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mendylou    2

I am not officially diagnosed with DH but after 2 years of research I know that is what i have. There are only 2 places on my body that have never had breakouts. They are the palms of my hands and the soles of my feet.

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mendylou    2

When you are able to post those pics it would be very useful to the rest of us. I am also a new member & have found this to be the best source of info. I have been gluten free for 2 years and in that time I have never had skin that wasn't broken out with lesions in varying stages.. They are not as bad as they used to be however.

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sisterlynr    7

My scalp is covered especially back of head. I have some lesions on both knees, not as much as in these photos. The sole of my right foot is covered with lesions. The ones on my foot have healed and the skin has peeled off.

Trying to load the photos. . . we'll see if I can get this accomplished. :huh:

http://i1323.photobu...6/closerash.jpg

http://i1323.photobucket.com/albums/u584/lindareading56/siderashclose.jpg

http://i1323.photobucket.com/albums/u584/lindareading56/closerash1.jpg

http://i1323.photobucket.com/albums/u584/lindareading56/lynupperbackrash.jpg

I have been on Dapsone since October 20th and eating gluten free and iodine free (started on the same day) I have lost 25 lbs and my sugar level is much better.

I still have the itching, burning and stinging but is probably at least 75% better now.

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squirmingitch    494

Oh you poor, poor thing!!!!! You've got it BAD don't you? Well, I don't know really anything about the dosing of Dapsone but I would say maybe you need to talk to your doc about upping the dosage. Now, upping the dosage will not make the places heal any faster. This stuff takes it's own sweet time healing & it is vexing in the extreme. So Dapsone will not help with that. But the Dapsone is supposed to stop any new outbreaks as well as stop the itch, sting, burn. After a whole month on Dapsone; still having the itch etc.... I would say it's time to talk to the doc.

And I've said this before but it bears repeating ---- when you're on Dapsone it masks dh reactions so you have no gauge as to getting glutened or cross contaminated so you need to be ​ extremely careful that you are not getting the slightest trace of gluten. Just a reminder. :)

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sisterlynr    7

Oh you poor, poor thing!!!!! You've got it BAD don't you? Well, I don't know really anything about the dosing of Dapsone but I would say maybe you need to talk to your doc about upping the dosage. Now, upping the dosage will not make the places heal any faster. This stuff takes it's own sweet time healing & it is vexing in the extreme. So Dapsone will not help with that. But the Dapsone is supposed to stop any new outbreaks as well as stop the itch, sting, burn. After a whole month on Dapsone; still having the itch etc.... I would say it's time to talk to the doc.

And I've said this before but it bears repeating ---- when you're on Dapsone it masks dh reactions so you have no gauge as to getting glutened or cross contaminated so you need to be ​ extremely careful that you are not getting the slightest trace of gluten. Just a reminder. :)

Yes, I have it bad. I see a new dermatologist from University S Florida on Dec 6th. I see my PCP this coming Tues. I really am healing. :) The ones from my wrist to elbow have healed and just have dark spots, no itch. From my elbow to shoulder is trying to heal but I keep taking off the scabs. Not really itching there but feel the dryness. The lesions on both knees have healed just leaving discoloration. The sole of my right foot has healed completely. I guess just the stomach, back, buttocks, chest and scalp still have sensations. Like sitting here, I am aware that my skin feels tight and I could scratch my belly BUT I can control the urge. Dapsone has not taken that away completely with 2 a day = 50. It is so hard not to pick at my scalp :( the skin is really rough with scabs. I see such great improvement. Thankful for that!

My family keeps reminding me how much better I am. They have been so patient with me during the past 10 months, helping me apply the ointments to my back.

I've decided to eat at home unless there is a special occasion so I can know for sure, what I am eating. Thank you so much for your advice and response. :)

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squirmingitch    494

FWIW I have only eaten out once since going gluten-free & that was before my hubs found out he had it TOO. We went to Chinese & I brought my own food, a sandwich, I ordered wine & an iced tea to drink with my sandwich. They had no problem with it & I told them in advance what I was going to do. To me, it's just not worth taking the risk. It is so easy to get cross contamination in a restaurant situation.

It is wonderful that you have such a supportive family!!!!

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ampmomof3    0

This rash only went away when I put my son on a gluten free diet.....could it be DH? He is 10 years old. His twin brother had no rashes until we reintroduced gluten in July....his rash started also behind his ear and went away when we went back on the gluten-free diet. After a vacation in Oct.2012 we again ate gluten and there were no signs of the rashes....so we continued to eat gluten until the week after Thanksgiving because the rashes were slowly reappearing and also #2 twin was starting to blink his eyes constantley....these are hard blinks and he does this all day. It also occurred last year before starting gluten free and I had not thought about or noticed it again untill a few weeks ago during out gluten feast... Now all three of my kids have small red bumps on their hands and arms....there are only 3 or so in each area on each child?? I'm so confused.....

I posted a full story on another topic....

http://s1322.beta.photobucket.com/user/ampmomof3/library/#/user/ampmomof3/library/?&_suid=135489927789603616105665253381

Thanks and any opinions are welcome!

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squirmingitch    494

This rash only went away when I put my son on a gluten free diet.....could it be DH? He is 10 years old. His twin brother had no rashes until we reintroduced gluten in July....his rash started also behind his ear and went away when we went back on the gluten-free diet. After a vacation in Oct.2012 we again ate gluten and there were no signs of the rashes....so we continued to eat gluten until the week after Thanksgiving because the rashes were slowly reappearing and also #2 twin was starting to blink his eyes constantley....these are hard blinks and he does this all day. It also occurred last year before starting gluten free and I had not thought about or noticed it again untill a few weeks ago during out gluten feast... Now all three of my kids have small red bumps on their hands and arms....there are only 3 or so in each area on each child?? I'm so confused.....

I posted a full story on another topic....

http://s1322.beta.ph...616105665253381

Thanks and any opinions are welcome!

This is the thread ampmomof3 spoke about. I will reply there since the bulk of the information is there.

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Initial skin biopsy (punch): eczema negative, puritic vesicle observed

Immunoflorescence IgA skin biopsy (punch): Weak Postive

Blood Serum Celiac Comprehensive Panel (Quest Diagnositics - Ttg, EMA & EMA Titers): Positive

Small Intestine biopsy (EGD): negative

(pictures from Oct 2012 - prior to biopsies, tests & Dapsone use)

zvbcs3.jpg

2h7jgps.jpg

2n8c3v7.jpg

2vbs9w6.jpg

2ith9uh.jpg

34ec9kk.jpg

34dhsvq.jpg

waprmo.jpg

33lla90.jpg

2agm6vr.jpg

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      “Therefore, we suggest the possibility of a class effect.” Losartan, olmeseartan - doesn’t matter. And I'll say it again, there must be a way to disseminate this information more widely as I had no idea about this adverse effect, and never heard any docs speaking about it either. It really warrants wider sharing. Finally, one person who is often an overlooked resource is your pharmacist. They have just tons of knowledge and should be able to talk to you in some depth if asked, in an articulate, easy to understand way. They may even be able to do some digging and research for you. Plumbago
    • Plumbago et al, Thanks for letting me know  about the "artan" drugs being ARBs. I think Cyclinglady was right the Losartan research is not free and thus not public. I saw the link with no abstract but wanted to read it to confirm as you noted in your ETA that it was another "Artan" drug Losartan causing the problem. I believe it is. I found a great (after more digging) review of all the "artans"/ARBs or most of them about whether they can contribute to sprue symptom's in addition to Benicar. here on wiley as studied by the alimentary pharmacology and therapeutic journal (AP&T) for short. http://onlinelibrary.wiley.com/doi/10.1111/apt.14176/full I wish I knew how to post the able alone it is very informative.  Please scroll over the table to the end of it since it even tells how long to expect before your sprue symptom's/conditions improve IF the "artan" drug is causing your symptom's which I find the most helpful thing about the table.  They also note histological feature (degree of villi blunting) to expect on biopsy. They note Losartan can cause "total atrophy of duodenal villi" by their reporting. I also recently had an issue with my potassium levels so I feel sure it is the Losartan. I remember reading a study about how losartan was better at the "chronic cough" I had developed using Lisinopril so I changed to Losartan a few years ago . . . now I find I could of been making my GI symptom's worse. But to answer  your other question since I began taking Folic Acid a few months ago my BP numbers went down to a healthy level of 120/80 or less sometimes . . . but with medicine. I had already been thinking I wanted to try get off the BP medicine (for good) so this is more motivation. C0q10 worked well but it is too expensive for me to take all the time! I called my doctor to have them put me back on Amlodipine/Norvasc and I can't remember why I changed off that medicine to begin with now.  I do remember needing two medicine's back then to control my BP so maybe we stopped the Norvasc instead of the Linsinopril. But now that they have put me back on Norvasc I hope my potassium levels will correct themselves. I just don't feel safe anymore taking Losartan after learning it could be making my GI symptom's worse or causing the to be unreliable. I first thought my touch of D. was from an antibiotic round but when kefir didn't get me back on track I suspected something else when my Vitamin D levels showed up low too again! Thanks everybody for ya'lls great suggestions and good research on my behalf. I also recommend this verywell article if you are still having GI problems and you suspect an "artan" like ARBs BP medicine and looking for a medicine that might have less severe  or more manageable symptom's for your lifestyle because it comprehensively list's the medicine's by drug types. https://www.verywell.com/hypertension-drugs-1745989 no medicine is without a side effect as (I) am learning but I never thought sprue would be one for my BP medicine and why I prefer Vitamins when I can find out which one too take. Now that I have the Norvasc approved as a replacement for the Losartan I might see if my BP goes up again if I stop my medicine all together as I was hoping the Folic Acid might help me with it (without medicine) and it explains why I was low in Folic Acid to begin with again. posterboy,    
    •   Ironic, We went entirely gluten-free in our home after 2016 for how bad my neurological , joints, mood gets now in addition to my former gi, skin, and other issues . My son shows signs of my early symptoms and voluntarily went off gluten, corn, and milk like me as he did his own food like diary symptom tracking. My daughter continues on gluten outside the home. We warn her of our concern for at times in toddler hood she was constipated and would bloat.  We asked their Dr to test them as I was undergoing my testing and she said no until I had my diagnosis. As we know these things take time and my son went gluten-free . He said after watching mom on my gluten challenge that he will not go back on it .  We await technology further research and we silently watch our soon to be teen girl for we know even if tested negative it can show up one day.  She says I know mom I know. The more Whole Foods here in the home we notice she actually craves gluten / processed foods less and is slowly transitioning as well.  Does your child also naturally eat less gluten and processed as well away from home? I wonder if the taste buds / craving change as the parents diet changes food options.  Thoughts?
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