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Random Symptoms..steroid Addict..confirmed Celiac

CeciliaCeliac

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CeciliaCeliac Explorer
CeciliaCeliac
Posted

URRGGHHH!!! I need help. My symptoms are all over the board. Not the usual Celiac Symptoms with maybe 1-2 flare ups per year. (now 38 years old and have been suffering for 6 years) Here's the list.....1-2 somach flare ups yearly with horrible cramping, pain, vomiting, exhaustion all related to food....throughout the year, I have weird rash on knuckles, elbow pain, hair loss, bouts of hair turning grey, skin peeling on feet and fingertips, trouble swallowing/choking, weird muscle/back pain like there are bruises...... but nothing is there...history of asthma, scoliosis, chronic sinuitis, back pain and inflammation.....now Prednisone solves ALL my symptoms and makes me feel great!!!! but........I know it's not good to take forever and I need to find out what else is going on......the doctors won't help when you are self-medicating with steroids.....I need to find the link so I can help myself!!!!

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

How are you self-medicating with steroids? Isn't that always a prescription drug???

Anyway... if prednisone makes a difference then your problems are clearly autoimmune. Are you on the gluten-free diet? If you are then your GI symptoms shouldn't "flare up." However, there are some other autoimmune disorders (Chron's, ulcerative colitis, SLE, Sjogren's, etc...) where GI symptoms are either a prominent feature or a side effect. The hair loss, joint pain, peeling skin, and trouble swallowing sounds like hypothyroidism. The only way to be sure is to check your TSH and free T3/T4. The rash could be DH, especially if you're not sticking to the gluten-free diet.

Incidentally, the muscle pain could be fibromyalgia... or it could be one of the nasty side effects of taking too much prednisone. Do you know how dangerous it is to be on prednisone for long periods of time??

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Steroids are not addictive, but you DO need to taper off of them... otherwise you could have an adrenal crisis, which could be FATAL. Prednisone is nothing to mess around with on your own.

CeciliaCeliac Explorer
CeciliaCeliac
Posted
  • Author

Well, I tested positive and have been gluten free since April 23rd. Was doing ok and almost weaned off prednisone until a flare up 2 weeks ago. TSH tested normal (with replacement) in November and again about a month ago. Haven't had ANA tested yet....muscle pain started years before the steroids so I'm still at a loss.....thanks for the reply..... :(

How are you self-medicating with steroids? Isn't that always a prescription drug???

Anyway... if prednisone makes a difference then your problems are clearly autoimmune. Are you on the gluten-free diet? If you are then your GI symptoms shouldn't "flare up." However, there are some other autoimmune disorders (Chron's, ulcerative colitis, SLE, Sjogren's, etc...) where GI symptoms are either a prominent feature or a side effect. The hair loss, joint pain, peeling skin, and trouble swallowing sounds like hypothyroidism. The only way to be sure is to check your TSH and free T3/T4. The rash could be DH, especially if you're not sticking to the gluten-free diet.

Incidentally, the muscle pain could be fibromyalgia... or it could be one of the nasty side effects of taking too much prednisone. Do you know how dangerous it is to be on prednisone for long periods of time??

Open Original Shared Link

Steroids are not addictive, but you DO need to taper off of them... otherwise you could have an adrenal crisis, which could be FATAL. Prednisone is nothing to mess around with on your own.

Mother of Jibril Enthusiast
Mother of Jibril
Posted

Unfortunately, you need a lot of patience when you have autoimmune disorders. I'd say that for every five things I try (and I've tried a LOT of things in the last 14 months) maybe two of them work out. I've actually lost track of the number of doctors I've seen... primary care doctor (x4), gynecologist, allergist (x2), ENT, gastroenterologist, endocrinologist, rheumatologist, opthamologist... along the way I've been diagnosed with Hashimoto's (hypothyroidism), chronic dry eyes, antibodies to my own mast cells (which causes periodic episodes of anaphylaxis... a SCARY problem that started after six months on the gluten-free diet), and now it looks like my pancreas and kidneys are involved. Oh yeah... I also had surgery to remove a lymph node, which was thankfully benign. I see no end in sight to the doctor's visits.

Anyway... here's the main message I wanted to give you. If you pay attention to your body (and that means you have to stop self-medicating) you can use those signals to help figure out what's going on. That also means that you need to educate yourself so you can work with your doctors!!! There is SO MUCH to learn about autoimmune disorders. This website is a great place to start. Another resource I found useful is a book titled, "The Autoimmune Connection" by Jill Buyon and Rita Baron-Faust.

Once you know what kind of problems you're facing you can get appropriate treatment. That might mean going back on prednisone... maybe not. Like I said, it's a very dangerous medication. I'm sure it makes you feel better, but it's really supposed to be a last resort. Although it sucks having an immune system that overreacts to everything <_< a depressed immune system has a hard time fighting off things like bacteria, parasites, and cancer.

CeciliaCeliac Explorer
CeciliaCeliac
Posted
  • Author

Yep, thanks again for the info. If I go with my heart and what I've learned, the only link that really sets off a flare up is a sinus infection. I was hoping a gluten free diet was going to solve all my stomach problems, but my search will continue. Maybe I'm still in the healing process and just need more time. I trust my intuition and instincts and hopefully will have more answers soon. Thanks for the guidance.........and I hope you also have success in your search for better health.

Unfortunately, you need a lot of patience when you have autoimmune disorders. I'd say that for every five things I try (and I've tried a LOT of things in the last 14 months) maybe two of them work out. I've actually lost track of the number of doctors I've seen... primary care doctor (x4), gynecologist, allergist (x2), ENT, gastroenterologist, endocrinologist, rheumatologist, opthamologist... along the way I've been diagnosed with Hashimoto's (hypothyroidism), chronic dry eyes, antibodies to my own mast cells (which causes periodic episodes of anaphylaxis... a SCARY problem that started after six months on the gluten-free diet), and now it looks like my pancreas and kidneys are involved. Oh yeah... I also had surgery to remove a lymph node, which was thankfully benign. I see no end in sight to the doctor's visits.

Anyway... here's the main message I wanted to give you. If you pay attention to your body (and that means you have to stop self-medicating) you can use those signals to help figure out what's going on. That also means that you need to educate yourself so you can work with your doctors!!! There is SO MUCH to learn about autoimmune disorders. This website is a great place to start. Another resource I found useful is a book titled, "The Autoimmune Connection" by Jill Buyon and Rita Baron-Faust.

Once you know what kind of problems you're facing you can get appropriate treatment. That might mean going back on prednisone... maybe not. Like I said, it's a very dangerous medication. I'm sure it makes you feel better, but it's really supposed to be a last resort. Although it sucks having an immune system that overreacts to everything <_< a depressed immune system has a hard time fighting off things like bacteria, parasites, and cancer.

TotalKnowledge Apprentice
TotalKnowledge
Posted

If you have eliminated Gluten, then additional food intolerances could be exacerbating your conditions. Pinning down a food intolerance is hard to do since there can be a delay between eating the food, and a variable time that the symptoms persist.

I would say talk with your doctor, but some doctors are more receptive to helping you with food intolerances than others.

SGWhiskers Collaborator
SGWhiskers
Posted

Open Original Shared Link

Check out dermatomyositisis and polymyositisis. One of them has papules on the knuckles and some of the other symptoms you are describing. good luck finding the cause of your symptoms. I took prednisone for 5 days, and I dream of the doctor who will prescribe it for me even though it is typically bad in the long term. I don't ask because I know how bad it is for osteoperosis. I just spend my free time hunting for the reason for my own crummy extra symptoms.

Best wishes

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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

      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
      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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