hayley3

49 minutes ago, frieze said:

Look into microbiome. Tyramine can be produced to excess in the small intestine if the bacteria is not balanced properly.

I've been trying since 2006 to fix my microbiome.  I knew something was off.  I was dx'd with SIBO by endoscopy.  But now that I know I have celiac, that explains why I never could get better, no matter what I did even water fasting which did help briefly but then I'd eat wheat again. 

2 hours ago, ItchDrivingMeCrazy said:

It would be great to have a definite reason. I'm glad you know how to treat yours.

I still get the bruising. The dermatologist says it's from the itching. I hope that she is right (everyone must be right about something 🙂

My whole body was under attack at its worst. My arms and legs were so swollen I couldn't bend them! I ended up bed-bound for about three weeks. Terrible and very scary. I think that whatever the original rash is, the vitamin D deficiency left my body a little weak in defence 🙂. Hence I guess all the swelling and infection didn't allow for much sense to come out of the biopsy. 

The fear is that it comes back after Cortisol is finished. But I'm trying to ignore that possibility for now. Part of me is thinking though, maybe I should be looking at all of this from another angle. If the itch had not driven me insane, I would have never known how unhealthy I must have been, and probably for a long time. The diet I'm eating now has awoken my brain. I hope that does not sound weird.

Wow, can't believe they can't figure that out with the swelling.  I have a rare disorder called Erythromelalgia, and it causes blood pooling in the extremities...it took me years to diagnose myself because the doctors were clueless.

35 minutes ago, ItchDrivingMeCrazy said:

Hi 🙂

Thanks for your message Hayley3. I have not figured out the reason for my rash yet, but thankfully it is much much better now. I started 35g of cortisol a day in December, and it is tapering off until at some point in mid-March. 

I was also very low in vitamin D and have been taking supplements to raise those levels.

I'm so grateful for not itching. I stopped all gluten (and I have been super good, messed up only twice that I know of) straight after the biopsy in October. It came back negative, but I am not confident about that answer. The nurse did the biopsy on my back (she said it had to be there as the back healed better than the legs.) But at that time I had no blisters or rash on my back - only large hives. I asked her to take a photograph of the area as I couldn't see it, and you can see on the photograph that both of the circles she marked out are on top of swollen red hive skin i.e. not healthy skin adjacent to a lesion.

The dermatologist I saw after the results came in,  says that they can say with 100% accuracy that I have normal eczema  as the biopsies are never wrong 🙂. I have never had dry skin in my life, no hay fever and the itch I experienced was deep inside - not on the skin surface...so I don't think it is eczema but on the other hand, I don't care to argue any more as long as it stays down! Finger crossed.

At the moment I am not sure if it's the no-gluten diet, the Vitamin D supplements or the cortisol, but I feel like I'm 10 years younger. I have so much more energy and I get things done that have stayed on my long to-do lists for years. I know I should probably do a gluten challenge after the cortisol is finished but I just don't want to rock the boat 🙂 

It looks like you have two things going on, well 3 with the bruising.  I had my rashes biopsied previously and they came back all sorts of strange things.  Finally I went in there asking for a celiac biopsy..Of course they wouldn't actually do the celiac biopsy which is taking an adjacent sample but they did biopsy it..and by some miracle it came back dermatitis herpetiformis.  I think the other rashes were the same as the one that came back as dermatitis herpetiformis, except it was on my butt (mind you only the right side) and I had a bad episode of GI issues.  The back of your leg looks just like my rashes, but the medical people think it can't be anyplace but where google says it is.  I remember having it behind my knees, elbows and fingers.  Going gluten free delayed my diagnosis though, I was also doing water fasting which supposedly heals the stomach.

I know this is a late comment to this post but I hope you have something figured out by now.  All that bruising looks bad.

Thanks...I was hoping a healed stomach could process the tyramine better.

1 hour ago, knitty kitty said:

@hayley3,

I've tried that brand, but didn't like it.  It's got whole rice flour listed as an ingredient, including the rice bran.  Mine smelled like the bran had gone rancid.  

I couldn't eat iceberg lettuce without a lot of gastrointestinal distress.  I switched to Romaine lettuce.  Romaine is a veggie that has thiamine!  

When I was down to just green beans and lamb (easily digested), I started taking Tryptophan.  I also took an amino acid, Theanine, and Benfotiamine.  All of these help calm and heal the intestines.  And Zinc helps, too.  Zinc is a mineral we are commonly low in.  

What are you allergic to?  Is it a medically diagnosed allergy?  Is the pork in the form of ham, or bacon, salted, aged, as in high histamine?  

It's a tyramine buildup.  I lack the enzymes on my lining to digest the tyramine.

10 minutes ago, hayley3 said:

Endomysial AB, IgA

Immunoglobulin A, QN

Tissue Transglutaminase IgA

Anti-Gliadin Profile

If the Endomysial test comes back negative does that negate the positive biopsy?

 

Since I can't edit 30 seconds after posting...the biopsy was a skin biopsy for Dermatitis Herpetiformis.

Endomysial AB, IgA

Immunoglobulin A, QN

Tissue Transglutaminase IgA

Anti-Gliadin Profile

If the Endomysial test comes back negative does that negate the positive biopsy?

@knitty kitty  Thanks and yes, I"m taking a Dr Berg Vit D3 with K2.  My house is full of vitamin bottles, taking all of them may have delayed my diagnosis , in addition to doing water fasting to heal my SIBO.

I'll check the Life Extension Brand out..I currently take Solaray.  The smell actually turns my stomach, I"m not sure what it is about these B vitamins. LOL

I can't eat anything really.  Meat, chicken and some pork with simple veggies, such as broccoli, lettuce, peas, and green beans.  If I'm not allergic to it, it makes me sick, so really I am on a low histamine diet. 

34 minutes ago, knitty kitty said:

I like to keep my Vitamin D level above 80 because at that level Vitamin D can act like a hormone and regulate the immune system better and reduce inflammation.  

Have you considered supplementing the eight essential B vitamins?  These are important because our body cannot make them, so we need to get them every day from our diet.  Since malabsorption is a problem of Celiac Disease, boosting the B vitamins by taking supplements can improve your health, too.  

Does the VA have a nutritionist available?  A nutritionist can guide you to a nutritionally dense diet.  

Checking for and correcting nutritional deficiencies is part of proper follow up care for Celiacs.

I read that too, that it needs to be at least in the middle of the range so when I saw that my level was only raised to 21, I started buying my own Vitamin D from Amazon.  When I got cracks in the corners of my mouth, I was taking Vitamin B complex but something in there has a horrible smell with a horrible burp aftertaste.   I need to find a different one.   VA hospitals do not have nutritionists.

13 hours ago, Scott Adams said:

So most forums place strict limits on editing posts due to spamming activity--specifically link spam. 

If it is important to edit a post you can PM me with the link and the updated content.

What is the time limit?, for instance if you have misspellings...how long do you have to edit the post.  I can spell but my brain doesn't catch them til later when I'm re-reading.

3 hours ago, knitty kitty said:

@hayley3,

Didn't your doctor recommend supplementing Vitamin D in order to correct your very low Vitamin D level?  

Low Vitamin D can cause an increased risk of fractures and falls.  Vitamin D deficiency can lead to osteoporosis, muscle weakness and parathesia.  Low Vitamin D is also associated with anemia and infertility.  

Vitamin D is instrumental in regulating and lowering inflammation.  Vitamin D helps maintain intestinal mucosal integrity (repairing leaky gut).  

Have you talked to a nutritionist?  

The Endocrinologist gave me 50,000 iu for 2 weeks and that was it.  So I started taking it on my own which finally helped it to rise.  I took it a full year before it got to 50 and that helped me a lot.  No nutritionists at the VA.  But I still have a lot of muscle weakness and my ana is 1:640 which means my autoimmune stuff is active.   Derm clinic has offered to give me the celiac test today because my dermatitis herpetiformis biopsy was positive, but she said there's only one test at the VA, when I asked for the Celiac panel.

1 hour ago, Scott Adams said:

 

The typical blood test results that indicate anemia include:

Low Hemoglobin (Hb) Levels: Hemoglobin is the protein in red blood cells that carries oxygen. Low hemoglobin levels are a key indicator of anemia.

Low Hematocrit (Hct) Levels: Hematocrit is the proportion of blood that is occupied by red blood cells. A decrease in hematocrit can suggest anemia.

Low Red Blood Cell (RBC) Count: A reduced number of red blood cells can contribute to anemia.

Mean Corpuscular Volume (MCV): MCV measures the average volume of a red blood cell. Certain types of anemia may be associated with changes in MCV.

All those are fine, thanks.

1 hour ago, frieze said:

Actually may tie in with celiac.  What is your ferritin level?

I've never seen a ferritin test in the labs done.  My Vitamin D was 4 so I ask to have that one monitored.

I read there's a time limit but it must be only a few minutes cause I can't edit this one either.

I can't seem to be able to.

After doing a bit of research, the MCHC is meaningless, so not sure why it's on the lab work.

So for years I've had a low MCHC, but the doctors never mentioned it.

It was not super low (just out of range) so I'm figuring that is why.....but it bothers me that no one ever questioned it, especially when I had low WBC, and low Vit D.  I take vitamins which I guess also disguised some issues.  I had cracked lip corners so I took a B complex.  I take calcium, magnesium and salt pills to stop the cramps.

You wait for a clue to help the doctors but then it seems they ignore the labs when they are out of range.  So just wondering what lab values they classify as anemia.

Chiggerex cream is helpful.

On 11/4/2023 at 3:04 PM, julie falco said:

I wasn't diagnosed in 1967 that is when I had all tests done and they couldn't figure out what I had that was causing my issues.   I was diagnosed 5 years ago.  Which means back int he 60's they had no idea what I had.  

I signed up here in 2007 and just recently pushed to have my rash biopsied and it finally showed as Dermatitis Herpetiformis, It took me 17 years to get dx'd and I'm sure I had the rash before 2007.

I use Chiggerex cream found at Walmart.

I just had the biopsy done and they would not do it adjacent to the rash, but mine did come back positive.  Miracle that is.

I think because I'm allergic to dairy I cannot take enzymes that have lactase in them because I can take Pancreatin without any problems which digests proteins, starches and fats, so I am happy that FINALLY my problem is solved!  So sharing this in case it helps someone else.  :-)

No pineapple doesn't bother me.

So I did try the digestive enzymes with food.  One time I didn't vomit although my stomach wanted to, the next I vomited.  So no more enzymes for me.  Both times I ate a big meal and still I vomited.  It feels like it's burning in my stomach so not sure why I cannot take them.  It's very disappointing. 

I have a lot of muscle weakness...my muscles are disintegrating basically.  I read that SIBO can cause problems with digestion of fatty acids and amino acids and I see bits of stuff not digested in the BM so figured it would be a good idea.   When reading about how to heal the gut, they say that adding in a digestive enzyme is a good idea too.