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What's Going On?

minton

By minton
in Related Issues & Disorders

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minton Contributor
minton
Posted

Okay so I'm really getting upset and my mom is even worried. Since the beginning of December, odd things have been going on.

I get hayfever attacks so bad my eyes turn bloodshot, solid red. My anemia has randomly flared up. I have acid indigestion, bad gas, and ulcers. not to mention 3 canker sores so far this week. I have a horribly sore throat and cough a bit more than usual. And I have a DH like rash growing all over my body.

Let me explain this DH like rash. The spots start out the size of a pencil eraser and they grow to the size of a nickel, then start to heal and go away. They look like DH/plaque psoriasis, but I had that prior to dx and the patches got as big as a fist or hand, these get no bigger than a nickel. They started on my legs and then jumped to my upper chest, then my belly button area and arms. They do not spread by scratching. The area most concentrated with the spots is the top of my breast area. My upper thigh isn't much better. I know this is not a heat rash or anything of the sort because the areas it affects do not get sweaty and are exposed to nice air flow.

Any idea what might be causing this? I highly doubt I'm being glutened.

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ravenwoodglass Mentor
ravenwoodglass
Posted

You may not think your being glutened but it sure does sound like you are. Do you take any scripts? If so if any are generics they may have changed binders. Have you eliminated gluten from nonfood stuff? Pet foods, craft and home repair supplies can also be a source of CC as well as lotions, shampoos etc. I am sure you know about all the kitchen precautions and the risk from sharing things like condiments, pnut butter etc and have seperate stuff for your own use but just in case I figured I would mention it.

I notice in your photo you have a horse. Do you care for and feed him? That could also be a CC risk.

minton Contributor
minton
Posted
  • Author
You may not think your being glutened but it sure does sound like you are. Do you take any scripts? If so if any are generics they may have changed binders. Have you eliminated gluten from nonfood stuff? Pet foods, craft and home repair supplies can also be a source of CC as well as lotions, shampoos etc. I am sure you know about all the kitchen precautions and the risk from sharing things like condiments, pnut butter etc and have seperate stuff for your own use but just in case I figured I would mention it.

I notice in your photo you have a horse. Do you care for and feed him? That could also be a CC risk.

I probably should have mentioned that I have not been eating much as of lately...depression sucks. The loss of appetite from depression and the horrible reaction I get EVERYTIME i eat ANYTHING combine to be a reason why I have cut back on my eating...Canker sores all over my mouth don't help either. When I eat, no matter what I eat, I feel queasy and gassy and tired. The ONLY 2 foods I have found that don't upset me is bananas and applesauce and milk. Applesauce is very helpful...it calms the pain in my canker sores, it sooths my acid, and it temporarily helps my gas. I try to eat 1 bowl, breakfast lunch and dinner.

I have double and tripled checked my scripts. They are fine. My shampoos and such are safe, I checked that yesterday. I don't handle pet food at home because our animals are on diets (fat cuddly kitties) so my mom feeds them. All of my gluten-free food is kept in a pantry in my room, away from the gluten infested kitchen. The only possible source of CC is silverware and such...but they do run on the sanitize mode of the dishwasher.

The picture is regretfully old. I had a horse. He passed away July 15th of 2008. But I should add that after the pet food scare and the gluten in pet food being blamed, he went on a gluten-free diet too. The only gluten he had after I switched his feed was that he had a mixture of wheat hay and alfalfa hay. I cleaned his stall and handled his feed and hay and such. And I was way healthier when he was alive. God rest his soul.

flourgirl Apprentice
flourgirl
Posted

I have to chime in with this....we often overlook salts (iodized) and anti-inflamatories and the way they affect DH. I had to avoid these things (still do). If I took ibuprofen, I'd have at least 3 weeks of rash. I use Kosher salt.....nothing iodized for the same reason. I also know that over time the threat of rash will go away as long as you remain gluten free. If I'm not mistaken it takes about a year for the skin to rid itself of such sensitivity (could be wrong on the time limit). Hope you have success getting rid of it

minton Contributor
minton
Posted
  • Author
I have to chime in with this....we often overlook salts (iodized) and anti-inflamatories and the way they affect DH. I had to avoid these things (still do). If I took ibuprofen, I'd have at least 3 weeks of rash. I use Kosher salt.....nothing iodized for the same reason. I also know that over time the threat of rash will go away as long as you remain gluten free. If I'm not mistaken it takes about a year for the skin to rid itself of such sensitivity (could be wrong on the time limit). Hope you have success getting rid of it

I have been gluten-free 2 years now. I did not realize that ibuprofen could affect it, much less iodized salt! I was told since I naturally have low potassium to use sea salt. As for ibuprofen, I have needed it alot lately...i cant use tylenol because it doesn't work at all for me. Should i try a few days ibuprofen free?

Northern Shaman Newbie
Northern Shaman
Posted

As others have stated I also think you are being gluteed. I recently had a flare of Ataxia (my form of celiac disease) following Surgery on my back. I oboulsy needed some pain meds and did not do a real close look at the new meds. The symptoms started within 3 days of starting the prescription, and I was taking only 3 tablets per day max. So a total of 9 tablets of pain medication was enough to set off the severe Ataxia. Once noted I went to the pharmacy and obtained a package insert from the actual bottle my medications came from. Sure enough, the culprit was Pregelatanized Starch. Another brand had Corn Starch as a filler so switched and the symptoms went away within 24 hrs. Look hard at any binders. They are a nightmare.

If anyone is interested I can tell the story of what wonderful GFD was made available at the Hospital. That is another huge story and one we should all be spending time working on prior to the need for any admissions. The system has huge problems.

Hope this helps some.Get well

Northern Shaman

AliB Enthusiast
AliB
Posted

There is two or three things I am wondering about here.

You may be getting glutened but it is also possible that you may have developed intolerances and reactions to other foods which is very common - have you tried an elimination diet?

Could Candida and Leaky Gut be an issue? If certain food molecules are passing through into the bloodstream that will set up different toxic reactions.

It also looks as if your immune system is struggling. Do you take supplements to help boost it and help your body detox?

Rashes and spots are often indicative that the body is trying to offload something. Have you been tested for Helicobacter?

As Helicobacter neutralises the stomach acid in order to protect itself, the stomach produces more acid to compensate and that can cause acid reflux. If the acid is not strong enough that can prevent the sphincter from closing properly too. Lack of acid will cause food to sit in the stomach longer than it should, fermenting and creating gas. H. Pylori can also be present in the mucous in the mouth and throat. It produces toxins that can affect different areas of the body.

Doing a quick Google I found several links between H. Pylori, canker sores, anemia and weird skin rashes. Could it be worth getting it checked out?

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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

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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. 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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. 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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. 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    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      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
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      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
      Is this celiac?

      By trents · Posted

      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
      Is this celiac?

      By Scott Adams · Posted

      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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