Not Sure What to Think

[MMH13]

For reference I'm a 53F and I've been on PPI prescription for years for acid reflux/stomach issues. Recently I saw the doctor because of rashes I've had for months. Originally I had mirroring rashes on the sides of my knees which the doctor diagnosed as folliculitis. Those rashes went away after about 3 or 4 months only for new ones to pop up on my right calf, both my hips, and both my lower arms, and the back of my hands. They are now also spreading to my stomach. After months of this I finally made an appointment and the doctor suggested it was Celiac's. She sent me for a blood test but while it showed an iron deficiency that needed treatment (which was a surprise to me, as I eat a good diet) she said the test for Celiac's was negative--yet she was still "wondering" about it. I'm in the UK where right now it's hard to get into the doctor so I haven't spoken to her since, but I got so sick of the itchy rashes that I decided to just try going gluten free. It's only been a couple of days but I swear the rashes itch less--only to make me worry that I'm seeing the result I want to see. Also, when I looked up photos of dermatitis herpetiformis, a lot of them showed small blisters which I don't have, nor are they on my elbows. I'm also wondering if it's just my PPI prescription causing all the trouble. I know no one here can diagnose me but I'm just wondering if anyone has a similar story, or if I'm clearly off base. Thanks for any responses in advance.

[trents]

Welcome to the forum, MMH13! There are a number of blood antibody tests that can be run to detect celiac disease. Not everyone with celiac disease will be detected by just one, though it is common for physicians to order just one. Do you know what test or tests were run? Acid reflux and anemia are classic symptoms of celiac disease but certainly can be caused by other conditions as well. Just be aware that if you choose to trial a  gluten free diet you will invalidate any further testing for celiac disease without adding back in significant amounts of gluten for a period of weeks. By significant, I mean the equivalent amount of gluten found in 4-6 slices of bread daily.

[MMH13]

Thank you for your reply! Unfortunately I don't know which test was run--they were testing for several things, I think, I wasn't really told much. I've been reading posts on the forum and I saw that not eating gluten will invalidate future tests; I guess I was just desperate to do something about the rashes. It appears I may have to just keep on keeping on, though, in the event that they do test again. Quite frustrating!

[trents]

Also, be aware of the health damage that can accrue from long term PPI therapy. It raises the PH of the gut and inhibits the breakdown and absorption of nutrients. And you are already anemic. Osteoporosis can also be a result. Oddly enough, we know that in some people, long term PPI therapy can blunt the small bowel villi as does celiac disease. I mention this because it is a drug that was never intended for long term use but physicians tend to put people on them and then forget about it because they are so effective in addressing immediate symptoms like acid reflux. And it is so easy to become dependent on PPIs and it can be difficult to wean yourself off of them after having taken them for a long time. I know. I have personally been through this cycle.

[MMH13]

No, you're absolutely right. I've been trying to wean myself off of the PPI drugs and am now to the point where I take 10 mg every other day. I tried to go off them once before and was down to 1 every 3 days but then had a setback and gave up for a while. This time I'm determined. I've come to realize it's entirely possible that the PPI therapy led to my anemia, which caused my rashes. It would just be nice to have a definitive answer.

[trents]

I had setbacks as well when trying to kick the PPI dependency. Took me about a year and a half to fell like I had largely succeeded. I found that using TUMS when I had spot flareups of reflux helped me get past the bumps in the road. Oddly enough, one thing that seemed to help the most was apple sider vinegar. I put a tablespoon of apple cider vinegar in about 6 oz of water and drink it right breakfast every morning. Since doing that the past several months, it seems to have put the coup de gras to my reflux.

[MMH13]

Thank you so much for that advice, I will try the apple cider vinegar. It really feels like it's well past time to be done with the omeprazole (generic name of the drug here in the UK). I think I will also go back to eating gluten in case they decide to test again. You've been so helpful, I appreciate it!

[trents]

If you are a coffee drinker, another thing the helped me with conquering the reflux was switching to using low acid coffee. There are many different brands but the one I use is Folgers "Simply Smooth." Do you have a hiatal hernia? I have one and it exacerbates the reflux disease because it prevents the esophageal sphincter from closing completely.

[MMH13]

I'm not aware of having a hiatal hernia; I've only heard of them recently because my mother-in-law has one. I've recently given up coffee in my bid to get off of Omeprazole, and have contented myself with tea and ginger tea. The ginger tea in particular helps me quite a lot.

[Scott Adams]

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful:

 

[knitty kitty]

Welcome to the forum, @MMH13,

Yes, @trents and @Scott Adams have good advice.  

Do try to get off the ppi, omeprazole.  

This study found that people with Celiac taking PPI's like omeprazole are seronegative.  

 The Impact of Acid Suppression Medications and Non-steroidal Anti-Inflammatory Drugs on Clinical and Histologic Features in Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511753/

Anemia can affect not only the production of red blood cells, but also white blood cells, like those that make anti gluten antibodies.  

Hope this helps!

[MMH13]

Thank you, everyone, I'm going to read those articles--and I feel more determined than ever to get off the omeprazole!

[MMH13]

I'm wondering, is it likely to be dermatitis herpetiformis if I don't have the blistering? Also, my rashes are on my arms, hips, calf, and stomach, which doesn't seem the usual areas?

[knitty kitty]

dermatitis herpetiformis that resembles folliculitis is a thing.  I've had blisters as well as the follicular type.  

Any area is susceptible to an outbreak.  Keep in mind that dermatitis herpetiformis is pressure sensitive, so avoid wearing elastic waistbands, belts, and tight fitting clothing.  

[MMH13]

Thank you for sharing that about your dermatitis herpetiformis, it's really useful information. I'm particularly interested by what you said about pressure sensitivity; I suspected that the winter leggings I was wearing contributed to the problem and switched to looser clothing. I've also noticed the thing about elastic waistbands, as that's the area I'm having problems with it spreading now. I will be relieved when I get a definitive answer/diagnosis.

[knitty kitty]

Yes, I understand.  

I get outbreaks on my legs if I wear leggings.  I switched to flannel, nice and soft. 

Do ask your doctor about supplementing with B vitamins.  Niacin B3 helps the dermatitis herpetiformis spots heal.  

Have you asked about a genetic test?  You have to have specific genes for Celiac Disease to develop.  

[MMH13]

All I've had is one of those blood tests where they test for all sorts of things. The results said I had an iron deficiency but while it came back negative for Celiac's the doctor said she was still "wondering" about it. I haven't spoken with her since (huge backlog with the NHS here in England at the moment). Thus, I don't really know where we're going from here. I'm just sort of reaching out because I'm frustrated. I appreciate how open you've all been.

[knitty kitty]

Good for your doctor to be wondering about it!  She's on the right track.  

Anemia, diabetes and thiamine deficiency can cause seronegative results.  

Unfortunately, if you go gluten free, your intestines will start healing and damage due to Celiac might not be apparent.  But, on the other hand, PPI's cause intestinal damage, too, so they might attribute the intestinal damage to the PPI's and miss Celiac Disease.  

PPI's are bad news.  I do hope you can get off them.  

A genetic test for Celiac does not require eating gluten.  

Until a new way to diagnose Celiac without having to consume gluten is invented, we're between a rock and a hard place.  

Sending encouragement!

[trents]

PPI's can be a wonderful healing agent when used as prescribed on the label which I believe recommends use of up to 8 weeks. But they are like antibiotics in that they are overprescribed and undermonitored. Docs generally prescribe them and then keep prescribing them because they take care of immediate symptoms so well. Physicians are more into treating symptoms than uncovering causes.

[MMH13]

Thank you so much, everyone. For the moment my doctor just has me taking iron but hopefully we can reconnect soon. I'm going to look into genetic testing, too. Great advice all around and I appreciate it--and you can bet I'm going off the PPIs!

[trents]

5 hours ago, MMH13 said:

Thank you so much, everyone. For the moment my doctor just has me taking iron but hopefully we can reconnect soon. I'm going to look into genetic testing, too. Great advice all around and I appreciate it--and you can bet I'm going off the PPIs!

That's a good idea. It can at least establish the potential for developing celiac disease and can help people decided between a celiac diagnosis and NCGS (Non Celiac Gluten Sensitivity). And it doesn't require a gluten challenge and can be had without a doctor's prescription.

Edited April 23, 2024 by trents