Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Frustrated And Fed Up

mollygf

Recommended Posts

mollygf Newbie
mollygf
Posted

Since 2008, I have been dealing with the most ridiculous health issues, blue hands, joint paints, numbness, fatigue, canker sores (my entire life)feeling puffy, and gross, never feeling full, and extreme stomach pains that would leave me in horrible pain. I've seen so many specialists and doctors and it seems they only care about curing the symptoms and not trying to find out the problem! I've been tested for everything and in 2008 I did the celiac blood test and it came back negative. I felt hopeless. During the summer and fall I experienced the worst pain of my life that left me unable to move for an entire day. When I went to the doctors I was told to stop eating any diary, and anything that could hurt my stomach for example, no coffee, no sauce, no orange juice, no salsa I basically was left eating pudding and pretzels and didn't even lose any weight.

I had an endo scop surgery, and the results came back as gastrisis, but when going over the stuff on the phone the doctor mention something about sprue and then said that it didn't seem serve enough for me to do the diet, really how is this possible! Its been frustrating and upsetting I just want to feel good, so 17 days ago I started my gluten free diet, and then last week I started to break out in hives, and my elbows have become extremely dry. I am itchy all over and I can't take it anymore. I am frustrated with no answers and at times I feel like giving up. I feel bad for my loved ones, and my mom and boyfriend especially. I just feel like all I do is complain and that they must be so sick of hearing it. I just wish I had a doctor who actually cared and that someone would be willing to help me.

I made an appointment with a dermatologist today to see about my skin, I am thinking I will probably just vent to her about my issues because at this point, I have exhausted all my resources and I feel like throwing in the towel. I just feel like no one that can help actually cares. This forum has been very therapeutic so far and I am hoping someone can help me!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


MsCurious Enthusiast
MsCurious
Posted

Since 2008, I have been dealing with the most ridiculous health issues, blue hands, joint paints, numbness, fatigue, canker sores (my entire life)feeling puffy, and gross, never feeling full, and extreme stomach pains that would leave me in horrible pain. I've seen so many specialists and doctors and it seems they only care about curing the symptoms and not trying to find out the problem! I've been tested for everything and in 2008 I did the celiac blood test and it came back negative. I felt hopeless. During the summer and fall I experienced the worst pain of my life that left me unable to move for an entire day. When I went to the doctors I was told to stop eating any diary, and anything that could hurt my stomach for example, no coffee, no sauce, no orange juice, no salsa I basically was left eating pudding and pretzels and didn't even lose any weight.

I had an endo scop surgery, and the results came back as gastrisis, but when going over the stuff on the phone the doctor mention something about sprue and then said that it didn't seem serve enough for me to do the diet, really how is this possible! Its been frustrating and upsetting I just want to feel good, so 17 days ago I started my gluten free diet, and then last week I started to break out in hives, and my elbows have become extremely dry. I am itchy all over and I can't take it anymore. I am frustrated with no answers and at times I feel like giving up. I feel bad for my loved ones, and my mom and boyfriend especially. I just feel like all I do is complain and that they must be so sick of hearing it. I just wish I had a doctor who actually cared and that someone would be willing to help me.

I made an appointment with a dermatologist today to see about my skin, I am thinking I will probably just vent to her about my issues because at this point, I have exhausted all my resources and I feel like throwing in the towel. I just feel like no one that can help actually cares. This forum has been very therapeutic so far and I am hoping someone can help me!

So sorry you're going throught all this... not fun! I have no idea, but it sure sounds like celiac or gluten intolerance. You know, sometimes I think doctors and researchers would be leaps and bounds ahead if they'd read sites like this, with real people that have real, and consistent issues that are all sounding the same, over and over and over again. You'd think they'd realize that the tests they have so far aren't giving all the answers, and they should stop dismissing these very real issues that patients have. :( Hope your doctor will take you seriously and you will get well soon.

AerinA Rookie
AerinA
Posted

Many, many of your symptoms match what mine were before I stopped eating gluten... my blood work was negative but I went gluten free anyway and the difference gets more and more pronounced every day. I had the same thing with the never feeling full, for the last three days I have been actually able to eat normal meals and haven't been totally miserable in between them. I feel so much more like myself and it has only been a month! Don't lose hope because of doctors who don't know the latest on gluten intolerance, or because of inconclusive tests. It really CAN get better... I know what it's like to spend years chasing doctors around and how frustrating it gets. You know your own body best. :) I hope you feel better!!

mushroom Proficient
mushroom
Posted

Hello,and welcome.

It certainly sounds like you have come to the right place. Your symptoms have a familiar ring to them. And even your current hives outbreak is all too familiar. It happened to me too. I will try to give a brief synopsis of what I think is happening.

Gluten intolerance causes us to develop what is called a leaky gut, where larger than normal food particles are able to pass into the blood stream. These larger particles are not recognized by the body's immune system as something that should be there, so they are treated as "enemy" and the body sets off a response to them just as it would if it encountered a cold virus. Except that the body cannot "conquer" this food particle. If it keeps encountering it it keeps reacting to it and it becomes an autoimmune response whenever it comes across it. This may be a large particle of corn, it may be potato, it may be beans, the possibilities are endless. So unfortunately, because of the gluten that we are intolerant of, we also become intolerant of some other foods. And the body has varying ways of exhibiting these intolerances. Sometimes you will get a gluten-like reaction with diarrhea and bloating, sometimes you will get a rash, sometimes you will get hives.

I was too late in understanding this and didn't realize that I still had a leaky, unhealed gut, so I developed many additional intolerances. I was already intolerant of corn and soy (by skin testing) before I quit gluten. After quitting gluten corn gave me bloating, soy gave me skin redness and rash, potatoes and citrus gave me hives. So (and I am very sorry to have to tell you this) you work is not over yet :(

The best advice I can give is to revert to a very simple diet of whole processed (unlikely-to-provoke-a-response) foods and stabilize on that diet. Then add back in one food at a time and see how you react over 3-4 days. If no response try something else. Keep a food and symptom diary while you are doing this. Eventually, you should find your trigger foods. A sample beginning diet might look like chicken and turkey, veggies (not the nightshade family of potatoes, tomatoes, peppers and eggplant), rice, fruit, seeds, nuts, When you add foods, leave the top allergens until last (and these ten to be a little different - although not a lot) from the general population.) Avoid soy, corn and dairy (especially) since most new gluten-freers do not tolerate this because it is digested by an enzyme made in the small intestine. The idea is to expand your diet as quickly as possible by adding in those things you are most likely to be able to tolerate.

I hope this all makes sense to you. Ask any questions you have. :)

MsCurious Enthusiast
MsCurious
Posted

Hello,and welcome.

It certainly sounds like you have come to the right place. Your symptoms have a familiar ring to them. And even your current hives outbreak is all too familiar. It happened to me too. I will try to give a brief synopsis of what I think is happening.

Gluten intolerance causes us to develop what is called a leaky gut, where larger than normal food particles are able to pass into the blood stream. These larger particles are not recognized by the body's immune system as something that should be there, so they are treated as "enemy" and the body sets off a response to them just as it would if it encountered a cold virus. Except that the body cannot "conquer" this food particle. If it keeps encountering it it keeps reacting to it and it becomes an autoimmune response whenever it comes across it. This may be a large particle of corn, it may be potato, it may be beans, the possibilities are endless. So unfortunately, because of the gluten that we are intolerant of, we also become intolerant of some other foods. And the body has varying ways of exhibiting these intolerances. Sometimes you will get a gluten-like reaction with diarrhea and bloating, sometimes you will get a rash, sometimes you will get hives.

I was too late in understanding this and didn't realize that I still had a leaky, unhealed gut, so I developed many additional intolerances. I was already intolerant of corn and soy (by skin testing) before I quit gluten. After quitting gluten corn gave me bloating, soy gave me skin redness and rash, potatoes and citrus gave me hives. So (and I am very sorry to have to tell you this) you work is not over yet :(

The best advice I can give is to revert to a very simple diet of whole processed (unlikely-to-provoke-a-response) foods and stabilize on that diet. Then add back in one food at a time and see how you react over 3-4 days. If no response try something else. Keep a food and symptom diary while you are doing this. Eventually, you should find your trigger foods. A sample beginning diet might look like chicken and turkey, veggies (not the nightshade family of potatoes, tomatoes, peppers and eggplant), rice, fruit, seeds, nuts, When you add foods, leave the top allergens until last (and these ten to be a little different - although not a lot) from the general population.) Avoid soy, corn and dairy (especially) since most new gluten-freers do not tolerate this because it is digested by an enzyme made in the small intestine. The idea is to expand your diet as quickly as possible by adding in those things you are most likely to be able to tolerate.

I hope this all makes sense to you. Ask any questions you have. :)

It makes sense to me... and is very good information that I will keep in mind when I finally get to go gluten-free. Your post grabbed my attention because of the hives thing. My dad (who I think might have gluten issues) has hives that almost seem chronic and he is on meds for them, but once again, meds treat the symptom and do not get to the cause and resolution to the problem. Did you have hives often before you were diagnosed? Also, if you get leaky gut, does that get healed up after you go gluten-free? Or is that just a chronic problem that you have to live with now? See how much I don't know? There's just soooo much!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748
    Michelle C.
    Newest Member
    Michelle C.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • 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/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.