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What Is Wrong?


minton

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minton Contributor

Okay so about a month ago, my DH started coming back and I have checked everything. I am gluten-free. 3 weeks ago, a canker sore popped up. The first one is now finally healing, but 2 more are now present so literally the only thing I can eat is applesauce. I take multivitamins and I can drink juice and milk and water. All other drinks are KILLER on the sores. Chewing food is out of the question right now.

My DH has spread daily. I have called the manufacturers of EVERYTHING I consume, nothing is CC. My prescriptions are all quadruple checked.

But the DH isn't all. For the past month I've noticed a worsening of many things. My anemia is back. I'm nauseous all the time. My left side randomly goes numb. The right side of my face HURTS when barely touched, my left side feels fine. I have sharp headaches. My skin goes from extremely oily one day to dryer than a desert the next. I have severe abdominal cramps (not menstral related). My balance is OFF. And by "off", I mean I fell down the stairs 2 nights ago from loss of balance. My memory is failing horribly. I went to write my own address down (lived there 17 years) and I forgot the house number. And my eyes are constantly red and itchy, like an allergy attack, but benedryl does not help at all.

Any ideas what may be wrong?


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rinne Apprentice

Sorry you are feeling so badly. :(

I know when my B12 levels were low I was dizzy. I was clumsy too and fell a number of times but since I remedied that, with B12 shots and methylcobalmin, I have been better. Where are your B12 levels at?

minton Contributor
Sorry you are feeling so badly. :(

I know when my B12 levels were low I was dizzy. I was clumsy too and fell a number of times but since I remedied that, with B12 shots and methylcobalmin, I have been better. Where are your B12 levels at?

b12 levels are good. I take b complex supplements on doctor's orders.

rinne Apprentice

Could anything have changed in your workplace? Soap dispenser?

minton Contributor
Could anything have changed in your workplace? Soap dispenser?

okay, new "symptom." I have blood blisters forming on the tips of my fingers. They are under about 3 or 4 layers of skin. Some are liquid blood and others are what looks to be dried blood. I have not been pinching my fingers. So now I am randomly developing pools of blood under my skin. Yeesh!

I wouldn't know if work or school has changed anything such as soap. I refuse to use my work or schools bathrooms (school had an outbreak of MERSA staph infection in the bathrooms last year). My own soap at home, straight down to laundry detergent, has not changed. My mom has dye and fragrance allergy issues so she has always been very particular about the products she buys.

ravenwoodglass Mentor
okay, new "symptom." I have blood blisters forming on the tips of my fingers. They are under about 3 or 4 layers of skin. Some are liquid blood and others are what looks to be dried blood. I have not been pinching my fingers. So now I am randomly developing pools of blood under my skin. Yeesh!

I wouldn't know if work or school has changed anything such as soap. I refuse to use my work or schools bathrooms (school had an outbreak of MERSA staph infection in the bathrooms last year). My own soap at home, straight down to laundry detergent, has not changed. My mom has dye and fragrance allergy issues so she has always been very particular about the products she buys.

Have they checked your levels of Vitamin K? If you have not injured your fingers those blood blisters could be a sign of something serious. Please go back to the doctor as soon as you can.

minton Contributor

Okay here's an interesting question. In some other posts, which I forgot I put up, (yes my memory SUCKS) H. Pylori was suggested. Vitamin K has been suggested here. As well as the B Vitamins. Of course, CC has ALWAYS been suggested. But with my lack of eating ability at the present, CC is least likely. Other vitamin deficiencies havebeen suggested by my parents. And when I look up ALL the suggested ideas, they all have one cause in common. ALL say that a systemic candida infection can cause the problems. H. Pylori even thrives in a candida infected system.

I match plenty of candida symptoms...and I even posted about that wondering if I should try the diet. Given that, if candida is causing this stuff, should I start the diet to treat the candida before I start treating the problems? One would think that if candida is an underlying cause, that treating the manifested symptoms alone would not be good enough....input on this idea would be great!


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mommida Enthusiast

Can you describe the "pools of blood" under the skin? If you think they have a purple color to them, get medical attention as soon as possible. Can you look up ITP, Idiopathic Thrombocytopenic Purpura, it is considered another auto-immune disorder.

ravenwoodglass Mentor
Can you describe the "pools of blood" under the skin? If you think they have a purple color to them, get medical attention as soon as possible. Can you look up ITP, Idiopathic Thrombocytopenic Purpura, it is considered another auto-immune disorder.

Thanks for posting this. I think you have helped me solve a mystery that has gone on for years. I have been covered in pinpoint hemmorhages for many years now and even holding a grocery bag over my arm will cause bleeding under the skin. I haven't seen a doctor in a couple of years now but will be finding one soon. When I was seeing them I always had so many other issues that little red dots under my skin were the least of my worries. I will be checking this out.

Minton, the NIH has a good bit of info on this here's a link-

Open Original Shared Link

mommida Enthusiast

My friend's brother was just diagnosed last year. He had an acute onset, requiring hospitalization.

There is another website for support or organization that is really great. The information was very clear and suggested some dietary changes. If I can find it again I will post a link.

Glad to know the information may have helped. :)

Laura

veggienft Rookie

Yes I think it's probably candidiasis. It's very common among celiacs. I think it's probably part of, or one of, the cause(s) of celiac disease.

Open Original Shared Link

Whether you have candidiasis or bacteria, the diet is the same. Stop consuming sweets and sugar. That includes fruit and the apple juice you're drinking. Drink de-chlorinated water, either "purified" or distilled. Consume probiotics. I eat yogurt, which would not be suitable for a casein-sensitive person. Stop consuming salicylate dyes.

For celiacs, the diet would be heavy on meats and green veggies. Supplement with non-gluten vitamins C and B-complex.

..

Jestgar Rising Star
Yes I think it's probably candidiasis.

Just emphasizing that this is someone's opinion. Please avoid using the internet to diagnose yourself.

veggienft Rookie
Just emphasizing that this is someone's opinion. Please avoid using the internet to diagnose yourself.

Just emphasizing that this is someone's opinion. Please avoid using the internet to diagnose yourself.

..

Aleshia Contributor

I would get checked for both yeast AND ITP my sister has ITP and it can cause serious problems if its not taken care of... one thing you could try, my naturopathic dr. told me the only thing she has seen that treats ITP successfully long term is sesame oil. she suggested my sister have a teaspoon of it daily. which could be like on salad or mixed into a shake or whatever if you don't like it plain :) hope that helps!

RiceGuy Collaborator

The recommendation of methylcobalamin (B12) was my first thought. That and magnesium. I've read that blood levels of B12 are not reliable for determining a deficiency. Some on this board have even had to turn to the shots in order to get their levels up enough. Researchers say you cannot overdose on B12, so it can't hurt to get more. Most supplements use cyanocobalamin, which, believe it or not, has cyanide in it. That, and the fact that Pernicious Anemia can prevent the proper absorption of B12, is why I always suggest a sublingual methylcobalamin.

Also, consider that many nutrients compete for absorption, so taking a lot of one can lower absorption of another. From what I've read, this seems most true for minerals. Calcium and magnesium tend to compete, so it is often suggested to take these at separate times of the day. Vitamin C helps the absorption of iron and other minerals.

Although candida didn't occur to me, you should be able to try some of the candida killers without issues either way. The one I always recommend (because it worked for me) is caprylic acid capsules. AFAIK, it won't do any harm even if there's no candida overgrowth.

How are your fingernails? They are often effected by certain deficiencies, especially B12.

April in KC Apprentice

If your DH is coming back, it would seem like the answer has to be gluten. I know it sucks, but what else is going to cause DH and mouth sores? I have both with gluten, and the only thing that causes them for me is gluten. (I tried a new brand of potato chips this week and started getting itchy - no more of those.)

Could you get your Celiac antibody levels re-checked? Whatever test was most positive before you went gluten-free, you should have that one rechecked now, as it will be the most sensitive.

Gotta keep looking for the gluten...

Maybe consider doing a whole foods fast (non-processed fruits, veggies & meats) for a week or two to see if the DH calms down.

The other symptoms sound like gluten, too, but they could also be from other causes (as others have suggested). But DH outbreaks are caused by gluten. In my experience, worsened by hormones & iodine - but not caused by hormones or iodine.

Roda Rising Star
Okay so afer talking with my future mother in law and observing her family's dietary habits as well as my fiance's symptoms, I think he might have Celiac.

Here is what I've noticed. His family eats organic, non-genetically modified wheat and other gluten products. They drink raw milk, and his mom's cooking is mainly gluten free (she's Italian and makes most stuff from scratch from organic non GM foods). I have actually found I can eat regular spaghetti at their house with almost no symptoms as long as I'm gluten-free for a long time before that. but, with the downturned economy, they have been purchasing less organic and more regular store bought glutenny products.

I just happened to read this in another one of your posts. It sounds like you are saying that you eat reagular spaghetti at your boyfriend's house. If that is the case you are injesting gluten hence the symptoms. Just a thought.

minton Contributor

RiceGuy- My nails are brittle and grow slower than average. I have a biting habit but when I let them grow, they break on their own and someties split in layers.

Roda- Yes, and that post refers to ONE dinner in JULY in which I ate a VERY SMALL portion because his mom and I had not had the celiac talk and that woman scares me. She and I have had the celiac talk and I do not eat dinner at her house anymore. At the present, her son (my beloved fiance) is not even living in her house! So yes, I Glutened myself at her house in JULY. Not since then. When I say I am Gluten free, I am SERIOUS. Especially with canker sores limiting me to apple sauce, unless my parents are sneaking gluten spaghetti noodles in my applesauce, I am gluten-free.

RiceGuy Collaborator

The poor nail health is often a sign of nutritional deficiency, typically due to insufficient vitamin B12, but can be related to other nutrients including zinc, vitamin D, vitamin A and others. Here is just one of many pages you can Google up: Open Original Shared Link

As for possible gluten sneaking in, if your fiance is eating gluten, then kisses you, there is the chance of getting glutened by that. If you handle postage stamps or envelopes, make sure they are the self-stick kind, and avoid touching the glue part. Watch out for stickers, including the ones from grocery stores, such as the sort they often put on bananas and other fresh fruits. Certain types of glues contain gluten, as do finger paints.

Another thing which comes to mind is other possible allergens. Some find dairy and other things cause very similar is not the same symptoms as gluten.

Jestgar Rising Star
The poor nail health is often a sign of nutritional deficiency, typically due to insufficient vitamin B12, but can be related to other nutrients including zinc, vitamin D, vitamin A and others.

My crappy nails appear to be genetic. My dad has them, and several of my brothers.

minton Contributor

RiceGuy-I will look into B12 supplements after school today. Kissing the fiance is at present, not a a possible cause. He has been out of town since December 24th. Letters, however, are a great point. I write him daily and the only envelopes available in my house are the one you lick. But, rather than lick them, I've been using a wet washcloth (the taste of the glue makes me want to be ill). Is it possible that just touching the glue, as little as I do, could still cause sucha major reaction?

I did find out last night - I bought some gummy candies that I checked out and are gluten-free. They didn't hurt my sores so much so I ate them at work - Last night at work, the instant one of the gummy candies went down my throat, SEVERE acid reflux came and caused painful burning burp hiccups too. My mom and I both have a list of the ingredients and will be watching closely to see if those ingredients can be narrowed down to one culprit. The company still says the product is gluten-free, we called this morning. But is it possible that whatever the evil ingredient is could also be causing the DH to flare up?

Sidenote: my doctor did tell me numerous times that DH is MAINLY gluten reactive, but he also mentioned that other food allergies can cause it to flare too. He said the 3 biggest food allergies aside from gluten that cause the DH to flare are soy, corn, and cow dairy. Since he is big into the latest research, I trust he may be right.

I'm 100% positive a life without gummy candies would not be bad at all. :P

Jestgar Rising Star

Are they different colors?

minton Contributor

Jestgar, are what different colors?

Jestgar Rising Star
Jestgar, are what different colors?

I'm sorry. Are your gummy treats different colors? Maybe you're reacting to a specific dye.

RiceGuy Collaborator
Is it possible that just touching the glue, as little as I do, could still cause sucha major reaction?

Yes, it is possible, though if you wash your hands immediately afterward, I'd like to think you'd be ok. However, some people have a reaction to such slight amounts, like walking past the bread at the supermarket, or the smell of toast in the toaster, so you should never say never.

I did find out last night - I bought some gummy candies that I checked out and are gluten-free. They didn't hurt my sores so much so I ate them at work - Last night at work, the instant one of the gummy candies went down my throat, SEVERE acid reflux came and caused painful burning burp hiccups too. My mom and I both have a list of the ingredients and will be watching closely to see if those ingredients can be narrowed down to one culprit. The company still says the product is gluten-free, we called this morning. But is it possible that whatever the evil ingredient is could also be causing the DH to flare up?

I agree with the possibility of the dye. Though if I'm not mistaken, gummy candies are corn-based, and as you know, corn is a top allergen.

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    • Theresa2407
      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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