Iiv

Skin biopsy is enough, as said above the endoscopy is probably just to see if you also have damaged guts. 

It's your choice. 

You could compromise too, and lower your gluten intake. 50mg is probably perfectly enough, since it does show damage to quite a few and you're aiming for low maintenance. (its far less than the 5 or more grams you eat today) this will not make your rash go away, but it's practice towards your strict gluten-free life. 

You could ask for a quick time. 

If your gut is damaged, it will take at least 3 months to heal, more likely far longer than that. The same goes for your rash. It won't go away in a few days. It will slowly begin to improve... After a maybe a couple of months without gluten. 

OT

Isn't that a felony? As in causing bodily injury or illness. (sry, but what a ******* ***. I'd be so pissed) 

"Assault Causing Bodily Injury or Mental Illness

Any assault as previously defined which results in a bodily injury.  Bodily injury is defined as physical pain, illness, or any impairment of physical condition.  Assault causing bodily injury or mental illness is a serious misdemeanor; punishment includes imposition of a fine ranging from $315 to $1,875 and/or imprisonment for up to one year. " http://www.grllaw.com/criminal-defense-division/charges-offenses/assaults/default.aspx

Previously defined" 

1. By committing an act intended to cause pain or injury to another coupled with the apparent ability to do it;"

1 hour ago, notme! said:

Notme! 

 Yes, I'll experiment some. At this time I'm pleased with desloratadin and ranitidin. But mixing might work well in emergencies, and I'll add the nasal and maybe eyedrops too. 

My aim is to keep the levels low enough with food. And hopefully I won't have these issues in a couple of years, but I have to assume I will. 

It's sad that you're on your own with this. At least I know I'm deficent, it's great to be able to explain to people why I'm not feeling well. But if your family is struggling with the same thing, at least you'll have understanding from them. 

I too react to scents, especially if I have pain in sinuses and neck. But not being hospitalized for it. Just worsening the pain and nausea. 

11 minutes ago, trents said:

Live, does the h1 make you sleepy? Why not some of the newer antihistamines (like Zyrtec) that aren't so sedative? Do they not have the same beneficial effect for the the symptoms you are treating?

No, I use desloratadin. A very friendly Antihistamine h1. No side effects at all, not even in higher doses. Not that I know. 

The h2 blocker, ranitidin takes off the edge off the rest of the histamine fatigue. It's as if I am being pumped with energy as it sets in. Hence it feels useless to take h2 at bedtime for me, when I can use the energy for other things than sleeping.  

Cetrizine makes me really tired though. 

I used to think that I might have ataxia. 

But it turns out that I had diamine oxidase deficiency instead (or at least) . This means that I can't metabolize biogenic amines properly, foremost histamines, because I don't have sufficient of enzymes to do that. 

Everything I eat adds to my bucket of Biogenic amines, and it tips easily over since my treshhold is a fraction of a healthy persons. 

I used to have a body temperature around 96,4-97,2. Always. I couldn't work up my own body temperature if cold, but needed someone else or a hot bath. 

Today I seem to have a body temperature always a bit above 98. And it just takes a few minutes to get warm again. 

This issue has caused a lot troubles, like hypotension, shivers, convulsions, fainting, loosing balance, blackouts, extreme fatigue, difficulty swallowing and walking, pain everywhere (osteopathic, nerve, soft tissue, muscles, chest, throat, headache, abdomen and sinuses), shortness of breath, tingling under the skin. Confusion and what I like to call a wrenched brain. 

Sometimes it feels like running a marathon just to stand up. And exercise increases the risk of a collapse. Sometimes I have no strength at all, cannot press my fingers together. Sometimes I have apnea while "awake". 

I don't know to what extent this deficiency is causing my issues, since I could have other unknown issues. But overdose on antihistamines reduces my symptoms tremendously. Both h1 and h2 blockers. 

 You could still have issues with excess histamines as in mast cell disorders or allergies, but because you lack enzymes to hunt histamines down. This can be a secondary disorder caused by damages in guts. 

On 7/15/2019 at 7:32 AM, clarareese said:

 

Yes, similar at least. 

But in my case it's down to diamine oxidase deficiency, DAO. This means that I have excess histamines running around in my system.. 

You can try and see what happens with your symptoms if you eat antihistamines. If it takes the edge off, then you might have excess histamines too for any reason. 

8 hours ago, notme! said:

Notme! 

Oh, yes. We're pretty much alone in sickness. Hopefully it will change, and patients will be in the focal point in health care. At least we are able to share things with each other. 

I will definitely try some nasal things to aid. But I can't try Xanax, I got a similar medication because the doc assumed my issues were only psychological. That was a horrible experience, I had severe convulsions for several hours. And the medication list for DAO deficiency is a big No for antidepressants and anxiety meds, as for many painkillers too. 

I take h1 twice a day, and h2 in the morning now. I get a lot of energy from H2, so it might not be a good idea to switch to nighttime. 

And I'll figure out what to eat and not. 

I did eliminate meat 15 years ago. Hardly eating any fish. No cereals, as little additives as possible. Will try to eliminate dairy too, and some "forbidden" fruits and vegetables..like tomatoes. 

13 minutes ago, Posterboy said:

Liv,

Here is another nice overview on SIBO and prevalence in Celiac's.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

I thought it was very striking how many Celiac's symptom's got better (among those still suffering)...not their Celiac but their symptom's.

Here is their paragraph on the connections of SIBO in Celiac's.

"Celiac Disease

Long-standing celiac disease can disturb gut motility, leading to small intestine dysmotility.48 A study of 15 celiac patients with persistent symptoms despite adherence to a strict gluten-free diet found that 66% had bacterial overgrowth on lactulose breath testing.49 All of these patients noted a resolution of their symptoms after being treated for bacterial overgrowth."

You might still be suffering from SIBO because the doctor's don't know to look for it....yet.

You can read it when you get the chance but the comorbidity of SIBO in Celiac's is high and should not be ignored in those Celiac's still suffering especially in those with a DAO deficiency.

I hope this is helpful but it is not medical advise.

Posterboy,

Thanx. 

I will try to feed the right bacterias, and hopefully this deficiency is secondary. 

1 minute ago, notme! said:

many of these things could clear up on a gluten-free diet and can be attributed to untreated celiac - give it a try, maybe cut your current symptoms in half?

Notme! 

I am on an extremely strict gluten free diet. The story is that I quit myself. And 9mts later had a slightly positive tTG-IgA result.  

But the celiac test was made together with a lot of other tests, because I felt as if it couldn't be just gluten or wheat. I became hypersensitive, had to keep my glutenfree to a maximum of 0ppm. Which didn't seem right. I was jealous...perhaps.. 

I had to find someone willing to run tests. That was difficult. 

But I'm not diagnosed with celiac since I haven't done a biopsy.. Don't even know if I can eat enough gluten for that. I have some IgE towards wheat too... Which I assume is the cocktail to my hypersensitivity towards cereals; ige + ttg-IgA + dao deficiency = no traces or chaos. 

My treshhold for gluten/cereal was that found in ONE vitamin pill containg dextrin derived from barley. Another one the next day was too much. It just wasn't fair. And doesn't seem right. 

The new thing after ditching gluten is the pain in my stomach. I hardly ever had stomachache. It's as if I was numb and not anymore. 

And then I couldn't eat things like potassium sorbate, it didn't really fit celiac. Maybe DH..?

I couldn't fit in the intolerance towards meat and sugar either, but those were old issues. 

I did not know that I was tested for enzymes too. It was a sad surprise realizing that my intolerance was caused by proteins. All food. Pretty much everything but water could tip the scales. "go ahead, enjoy your yolks with cucumber for the rest of your life" sort of. The lists are horrible. 

5 hours ago, Beverage said:

My friend used to have severe migranes and was greatly helped by magnesium supplements.  CALM powder by Natural Vitality is the one her doc recommended and it is gluten-free.

Thanx, good to know that there's a nice gluten-free brand. I personally don't have migraines, but magnesium helped me out with muscle cramps. I will check it out. 

I only have a headache... And probably all other symptoms of histaminosis... Hypotension, low body temperature, tingling, itchiness, fainting, shivering, convulsions, nosebleeds, fatigue, excruciating osteopathic pain (it feels as if the bones are about to shatter) , soft tissue pain, muscle pain, nerve pain, pain in abdomen, chest pain, PMS, dizziness, nasal congestion, hoarseness, sore throat, difficulty swallowing, confusion, forgetting to breathe even when "awake", shortness of breath, nausea, satiety, vomiting, bloating etc.  

Most of the symptoms are similar to celiac disease and other issues. I probably need to figure out what belongs to what, and to which extent. Or just keep levels down and hope that the reactions will become milder. 

7 minutes ago, cyclinglady said:

 Why?  My Mast Cell issues resolve or calmed down significantly once I healed from celiac disease.  

Try to find the root cause of your problems which may be untreated celiac disease.   The suggestion of a journal is also a good one as it helps identify food intolerances, stresses in your life, etc.   Good luck!  

I love to hear that your mast cell issues are under control!!!! 

Im dreaming to be able to keep things under control once healed too, this is inspiring. 

Unfortunately I'm a bad, bad patient.. and went on a strictly gluten-free diet nearly a year ago. I felt unheard and was in a very poor shape, and became terrible ill from tiny mistakes. My blood test was taken after 9 months on a GFD. ?. (no additives derived from barley or wheat.. I aim for no more than 0ppm)

They're not fast to call me in for a biopsy. Hence I'm considering to skip it. Or I'll be overdosing on histamines while eating gluten. 

18 hours ago, notme! said:

*puts on waders*   

how about something fairly simple?  try keeping a food journal, and see what food combinations are making you feel bad.  

Thanx. Keeping a food journal doesn't seem easy enough though ??. 

But I'll try a similar version. To find "safe" food to comfort with when to high. 

And will probably become addicted to H1 n h2 blockers. How long have you been on them? 

On 7/13/2019 at 4:39 AM, ch88 said:

I don't think you have ruled out all of these possibilities. DAO deficiency, although it maybe possible, is just one possibility among many.  

I don't think I have ruled out all possibilities, since dao deficiency is the only thing they've stated as a fact this far, together with some autoantibodies towards gluten. 

My DAO deficiency is measured at a hospital, so I believe that it may be possible. As I understand it, this falls under some kind of general food intolerance or pseudo allergy, because I cannot break down enough biogenic amines. Which are found in all foods that contain proteins. It can be primarily or secondary like lactose intolerance. The difference is that lactose doesn't enter your bloodstream, and it's not hormones that your body uses for a variety of things - like regulation of body temperature. Excessive histamine is usually one of the major causes for symptoms in allergies, it's what sets the reaction off. if you have DAO deficiency then you more or less always have an excess of histamines running around your body.. unless you control it well enough with food or block the symptoms with medication. 

The symptoms resembles a proper food allergy and/or food poisoning. If way too much biogenic amines you feel like your body is about to give you up - and that you are actually ready to let go.  

It's not at all nice, I would prefer stomachache or GERD. I hope it's secondary, but I am accepting it. I know I've had symptoms all my life. Hopefully I will be further examined, because it's as you said perhaps not the entire picture. 

Image shows a screen shot where the difference becomes clearer. Top left DAO deficiency, bottom left food allergies. Bottom right healthy controls, top right sensitivity without a known cause. From: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5947167/#!po=36.7188

4 hours ago, Posterboy said:

 

4 hours ago, Posterboy said:

 

It is me again the headaches could be a secondary effect from toxic build up of aldehydes when this histamine cycle is is disturbed  

They mention which comes up from time to time also a MTHFR gene defect.. .. 

.

 

8. Even if the DAO enzyme works hard to start breaking down the histamine, if there are additional blockages in other enzymes, harmful levels of aldehydes will increase. Aldehydes are very toxic and lead to a vast number of symptoms. Vitamin B1, known as thiamine, is a big player help reduce aldehydes."

 

Thanx

Aldehydes is probably the reason till why I lean towards " high consumption of alcohol or.. " in my reports, even though it can be nearly two years between a glass. This was funny and confusing. Apparently histamine and alcohol share high roads in the body for this reason. 

I'm fine in Iron, protein and albium. 

But I read that one can be high in Iron because of the body's defenses too. When you lack... Something.. The body produces a lot of iron to meet the needs. And you can therefore be deficit in deposits. 

B6 and copper is said to be great for DAO enzymes. I'm not keen on copper, since it has nasty side effects if overdose. But I might have to rethink. I added b6 to my diet anyway. 

I have a few decades left to 65, where sibo is most often found. So I might have time to reverse it. 

I don't eat any medications, not even painkillers. Except for antihistamines now. (one physician wanted me to eat serotonin, because he assumed my tiredness was caused by a depression. But I couldn't eat serotonin. I shook worse than Angela Merkel. Bad convulsions. Antidepressants are on the big No list) 

I will be careful with the h2 blocker, I don't have issues with gastric acids that I feel. But this blocker made the tiredness dissappear quite quickly. Hence I'll use it in emergencies. It's such an amazing feeling to be energized. I could become addicted. 

I might be Mao deficent too. Both Mao and Dao are involved in other biogenic amines found in proteins. 

I have a low mean platelet volume. Otherthan that, I think I'm within range. 

Do you have suggestions on what to eat to make life difficult for SIBO? 

What is MTHFR? 

Great!! It's going to be interesting to see what you think of them. 

But.. 

It sounds cruel to try to get a headache ?. 

Isn't that a wee bit to much to ask? What if the pills won't work? 

 I received my blockers today. Standard h1 (desloratadin) and h2(ranitidin). They worked awesome until recently. Quick fix for high energy levels. But it hurts when they are done with their work.?. 

On 7/7/2019 at 10:30 PM, Posterboy said:

 

Thanks Posterboy. 

It cannot hurt to feed the right bacteria in your gut. Especially not if one is very low in DAO. (I'm 3,5.. One study claimed that healthy controls were nearly 40(+-20).?). Luckily I don't have IgE mediatet allergies, and am quite low on Total IgE count and eosinophil. 

Haven't checked my histamine levels though. 

Hopefully my DAO levels will increase

13 hours ago, Awol cast iron stomach said:

  I do also wonder if the cc hits sin an area where my DAO also resides as you say.  

Please keep us updated and good luck

Appereantly it does, since the DAO enzymes are mostly produced in the mucosa of the small intestines. 

Hence if small intestine is damaged, it can become difficult for the body to produce enough DAO enzymes. With not enough enzymes to break histamine down, it builds up and you get overloaded with histamine in your body. With horrible reactions. 

Since I actually have some IgE antibodies towards wheat too, just a tiny amount, I assume the consequence of DAO deficiency is heavier reactions towards wheat than I would have with normal levels. (I have like 1/3 of the new cutting point for deficiency.)

My guess is that this is why I feel hypersensitive towards anything from cereals, the combination of actual antibodies and lack of resources to break the excess histamine down. 

I'm going to boost with c-vitamine too, and am considering copper.. Just that I don't like copper as supplement, I have this idea of it being potentially dangerous. 

40 minutes ago, trents said:

 

Edit: Amazon sells this. Just ordered some.

Yes, I'll eventually get some myself too. DAO definitely explains a lot of the weird symptoms I've had when being glutened, like blackouts apparently. 

My headaches (and DAO deficiency they say) is helped by zinc, b9 and b12 too. B6 is supposed to be linked to DAO too. 

Please give a review of how they work

So. 

I did a weak positive tTG-IgA test a couple of months ago. But they are not sure if they want me to do a biopsy. This is probably because I have been on a strictly gluten free diet since August. 

Today I received a letter claiming that I have histamine intolerance. This I will not buy because I can eat tons of histamine rich foods and will not exclude anything from my diet unless I feel ill. 

So I Googled and found

"Postheparin diamine oxidase levels were significantly lower in untreated celiac patients (mean 1.53 units/ml) than in healthy controls (mean 5.85), treated celiac patients (mean 4.82), and abnormal controls (mean 2.62). " 

(https://www.ncbi.nlm.nih.gov/m/pubmed/3134178/) 

This is a deficiency caused in the same region where autoantibodies are having their party. I'm therefore hoping this deficiency is secondary. 

And maybe this is of worth for others to know too, because I know some with celiac or ncgs have issues with lots of foods. 

On 6/23/2019 at 7:24 PM, TMB_EMB said:

 

INTERPRETATION
Specific Level of Allergen IGE Class kU/L Specific IGE Antibody ----- --------- ------------------- 0 <0.10 Absent/Undetectable 0/1 0.10-0.34 Very Low Level 1 0.35-0.69 Low Level 2 0.70-3.49 Moderate Level 3 3.50-17.4 High Level 4 17.5-49.9 Very High Level 5 50-100 Very High Level 6 >100 Very High Level The clinical relevance of allergen results of 0.10-0.34 kU/L are undetermined and intended for  specialist use.

 

 

 

 

 

 

 

 

 

 

 

 

Egg White (F1) IgE	0.35 kU/L
Class	1
Wheat (F4) IgE	0.14 kU/L
Class	0/1
Milk (F2) IgE	0.13 kU/L
Class	0/1

IGE

57 kU/L

<OR=304 kU/L

 

IgE is the common allergy antibody. IgE is not associated with celiac disease, but hayfever, dust, nuts, animals etc. It is antibodies attacking intruders, not like ttg-IgA which are autoantibodies attacking the body's own cells instead. 

In some countries, like Sweden, the reference range is >0.10. Anything above that is considered to have potential to cause issues. 

Some references might still be >0.34, like pollen. 

But when it comes to insects, wheat, egg they have lowered the range long ago. Probably because of people like your daughter, who is struggling with obvious allergic reactions but are still within the range. 

According to the results, her body is producing antibodies towards egg white more than to wheat. But her body is also producing antibodies towards wheat and milk. 

Not much, yet anyway. But apparently enough to cause her a lot of discomfort.

⚠ ? The elevated results for milk is for the protein. It has nothing to do with lactose!!! ? ⚠ 

This does still not rule out an autoimmune disease, whether it is celiac or IBD (like colitis). Just that your daughter does not have those autoantibodies they tested for now, like mentioned in other posts. 

On 6/25/2019 at 5:52 PM, arcountrygirl75 said:

 I'm freezing to death.  

I used to be cold, always. With 80+ degrees inside I needed two thick blankets to be able to sleep. My body temperature was usually around 96,4-97,2. I was seldom allowed to touch people. I needed heat from warm baths or another body to reheat myself if it was too cold. 

Today my body temperature is around 98-98,5 and it only takes a few minutes to reheat if been cold outside. I love it. 

This change in body temperature is due to

1. extremely strict gluten free diet (no additives derived from cereals, this is difficult as it's not always labeled, but I'm hypersensitive, and learn by trial and error)

2. heaps of vitamins to boost, I quadrupled the dose of B9 (approximately 1000% rdi) and B12 (5mg/day), and some extra zinc.

(Zinc is actually a very common deficiency among people with celiac disease, one study claimed that nearly 70% of the newly diagnosed had zinc deficiency) 

I don't have iron deficiency myself. But I think this could cause freezing too due to anemia. B12 deficiency can also cause anemia, pernicious anemia. 

Try to check your vitamins and minerals, hopefully this is the cause because it's easy to adjust. 

I did eat my vitamins and B12 daily for over a decade, but it didn't help until I quadrupled my dose of the latter. 

(B12 is used in emergency if someone suffer cyanide poisoning, they inject up to 10 grams. Its also used in some countries to ease pain. It's extremely difficult to overdose, and there's no known side effects. B9 can mask b12 deficiency if overdosing, but this too has no other known side effects.) 

7 hours ago, Posterboy said:

If you are still having depression issues try taking an enzymic Co-enzyme B-Vitamin a couple times a day.

 

 

Zinc deficiency is also connected to a diversity of mood issues and foggy brain and so on. adding zinc has actually been a quick fix for me. 

Zinc is found in whole grains too, and some other things that some people cut out in order to manage their stomachs. I can't eat meat which is high in zinc too. 

"zinc deficiency was observed in 67% of the celiac disease-patients" Deficiencies in coeliac

A review from neuropsychiatry: " the role of zinc in mood disorders"

33 minutes ago, Iiv said:

 

 

 

Fascinating to go through all those long forgotten issues. I still feel a burn on back and cheek, itching on arms, ears and head mostly. No, this is not something I would want to do again.

Unfortunately I cannot give any pictures of before going gluten-free since I didn't want show them back then. But most of them is covered here, in one week, milder.  

35 minutes ago, Iiv said:

 

This picture shows how the skin dries out and falls off. It's hard to see how the skin falls off on picture since its just tiny pieces.

Feeling: begins with itching within one hours. Then its like a really bad sunburn with mosquito bites and bug bites. It really burns, gets stiff and it hurts to move around or to lean againstsomething.

But I figured that it worsens for three days, before getting better. I still feel have some rashes though, a week later. And am still quite worn out most of the time. (I sleep a lot if I fuel myself with gluten, like 16 hours no problem but on average and hopefully at least 10. Still exhausted all day. When healed I sleep on average 7, but never more than eight. Fully rested and ready for marathon) 

 

 

Sorry for this one, displaying a variety of different rashes throughout glutening. Some I had completely forgotten about.

44 minutes ago, Iiv said: