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

Why Am I Allergic To Everything?


Woolygimp

Recommended Posts

Woolygimp Contributor

It took me nearly 15 minutes to get off the floor to type this out. Everything I touch, eat, drink makes me sicker and sicker. I can go from feeling fine and energetic when I don't eat to literally crying in pain, unable to walk, collapsing on the floor because my muscles ache so much, everything feels massively inflammed, muscle weakness so bad that I can barely lift my arm.

Every diet recommends Fish, Eggs, or all this other food that I can't tolerate. I'm pretty sure it was less than 3 fish oil capsules that did this to me.

These extra foods aren't intolerances because I don't get any gastroinestinal symptoms from anything but gluten. I don't think they are allergies because I've never seen "massive inflammation, muscle weakness, fatigue" to the point where it's crippling as a symptom of a food allergy listed anywhere.

I'm having a hard time finishing any of the diets when most of these "recommended" foods make me feel like I'm dying. Fish. Eggs. Nuts. Avacados. Grapes. Then there's grains and dairy, which I KNOW I react to because I have gastroinestinal symptoms and confirmed celiac etc. but even though they make me feel bad, they don't make me feel NEARLY as fatigued/poorly as fish, eggs, nuts and the other foods do.

Except it's not just food but it's medication too. I'm only 25 and I have celiac disease, sjogrens, chronic prostatitis (probably inflammation related), low testosterone (I get test flu after every injection from the benzyl alcohol?, I can't even take hydrocortisone without it making me pass out for hours. It's made me discontinue every medication except the testosterone. I couldn't even tolerate androgel.

EVERYTHING I touch makes me feel run down. Literally, the only thing that I feel comfortable eating is chicken and olive oil.

Fish is the worst for me, and it's a staple food where I'm from. I grew up on seafood and now literally any bit of it will make me feel like I've lost a ton of blood pressure, and literally make me sit in bed for days unable to move - almost in a dream like state. When I'm like that, it literally feels like it takes more energy and willpower to pick up my arm than it does to benchpress 100 lbs on a good day. Literally, picking up my arm when I feel like that feels like they have 50lb weights attached to them.

My life has been in a see-saw. I'll feel bad, then some days REALLY bad, then some days AMAZINGLY good. Albeit the bad days are far, far more common the good ones. But I don't know. I'm lost... maybe I'd be better off if I let the Dr. put me on a ton of prednisone.

I'm losing faith fast and I need some encouragement and I'm finding it increasingly difficult to follow a restrictive diet when most days I can barely get out of bed and most of the recommended foods cause me to feel worse than when I've been glutened... Sorry for the rant, I just really needed to vent.

Friends and family members aren't really willing to help because I put on a good enough "show" that they think I'm healthy, especially since I usually only leave my house on the days I feel well.


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



Celiac.com Sponsor (A8-M):



joej1 Apprentice

I know how you feel. How long have you been off gluten? Intuitively I think that one of the biggest things you can do to help yourself is to calm down. I know it is really hard to do that but if when your immune system has been tripping for so long because of gluten it becomes hypersensitized to everything. Do you meditate or do deep breathing? When your mind is constantly afraid of everything that you are eating your body will "react" to it because you expect a reaction. Look into rotation diets. These make sure you don't eat the same foods more often than every 4 days. Listen to your body over the doctors. Use sea salt with your meals. It will help your adrenals/blood pressure. Let me know if you have any questions.

-Joe

Takala Enthusiast

I have seen lots of fish oil capsules that are NOT gluten free. I would not go NEAR a fish oil capsule because the supplement and pharma industry is always changing ingredients, and the second you find what is supposed to be a reputable brand, somebody sells the company to the competitor, and the label changes, the ingredients change, and it is screwed up.

Rule: don't eat anything that makes you feel bad, even if recommended. I am on the high end of can eat most things except gluten. If I make a list of suggestions, it is for people to pick and chose from, Not An Edict.

Sometimes people type out their diets and they are eating hardly anything, because they just grew up that way and now are wondering how do the breadless cope? I'm meanwhile looking at their lists, and wondering how does one eat that and live, as it will have no fat and no vegetables or fruit.

Secondly, has anyone tested you for Lyme disease ?

And how about auto immune thyroid, not just thyroid levels ?

Third, make sure whatever a medical professional puts in you is Gluten Free, No exceptions. There are always alternative applications. Eating or getting glutened is going to fool you into thinking it is everything else making you feel awful, whether or not it is.

Forth, the feeling better when you don't eat phase- yeah, that's classic with the auto immune stuff like the sjogrens and the arthritis, until you get the diet lined out on what you can and cannot eat. Run like the wolves. Then crash like one. You see dogs sleeping 18 hours a day. There's a reason for that. ;)

If you really want to feel crappy, go on prednisone for a bit, then taper off carefully.... and a week later, you will feel like **** anyway. This is because steroids suppress your remaining natural hormones while you take them. Steroids are a godsend for emergencies ( I had poison oak all over my face nearly 3 years ago, including my eyelids, plus other areas) but after 2 short rounds of that to knock it back, it took me months to recover. I didn't really have a choice but what can you do. The funny part was at least my joints did not bother me while I was laid flat out for so long, also in a antihistamine and calamine lotion haze. But something changed in my metabolism that round, and I don't like it. On the other hand, I'm still BETTER than I was 10 years ago. B)

Woolygimp Contributor

I've been gluten free for over two years. All my gastroinestinal symptoms resolve immediately after going gluten free, and return (along with DH) everytime I'm glutened. I know when I'm glutened and these reactions that I have to these foods are definitely not the same reactions that I get when I'm glutened.

A reaction to gluten can take 3-14 days to resolve, sometimes longer for the DH to disappear.

The reactions I have to these foods last about 6-24 hours, maybe a tad longer, but instead of having any gastroinestinal issues, as I would with gluten, I instead get MASSIVE fatigue, inability to think, crushing weakness, and literally it feels like the blood is draining out of my body.

Juliebove Rising Star

Sorry to hear that. I have Fibromyalgia so I know what it is like to be in pain all the time. Just got over another flare and honestly don't know what triggered it. I do know I have to be careful not to overdo things. Perhaps that is what I did. It doesn't seem to take much.

Woolygimp Contributor

Sorry to hear that. I have Fibromyalgia so I know what it is like to be in pain all the time. Just got over another flare and honestly don't know what triggered it. I do know I have to be careful not to overdo things. Perhaps that is what I did. It doesn't seem to take much.

I just don't understand why I'm the only person here that reacts this way to food?

It's not like a generally feeling of malaise, it's literally being zombified after eating something that I react to. It may be a combination of anaphylaxis (cause of low blood pressure) mixed with my general fatigue to produce a double whammy effect? I don't know.

That or my pituitary is being attacked and my body can't supply enough cortisol when I'm being "stressed" by introducing an allergen and I'm getting massive fatigue from very low levels of cortisol? That would explain the weakness but not the muscle aches?

Juliebove Rising Star

I just don't understand why I'm the only person here that reacts this way to food?

It's not like a generally feeling of malaise, it's literally being zombified after eating something that I react to. It may be a combination of anaphylaxis (cause of low blood pressure) mixed with my general fatigue to produce a double whammy effect? I don't know.

That or my pituitary is being attacked and my body can't supply enough cortisol when I'm being "stressed" by introducing an allergen and I'm getting massive fatigue from very low levels of cortisol? That would explain the weakness but not the muscle aches?

Sorry, I just don't know the answer.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Okay, I know this is going to sound like a pretty dumb question under the circumstances, woolygimp, but who is recommending these diets for you and why? Have you tried going back to just a very basic diet of say, lamb, rice steamed veggies (I would recommend root but not potato), olive oil, and then adding in just one food at a time once you have stabilized?

  • 1 year later...
FlebbyDebby Newbie

I Know EXACTLY how you feel. I have yet to have met someone like me until now. I want you to know it can get better.. Much Much better. I promise. I am not only allergic to Gluten.. I am allergic to much more. The worst one that gives me pain all over my body is the Weigh. I am also allergic to bakers yeast. I am Allergic to many fruits and veggies as well. I did not know what I was allergic to until I went to a holistic Doctor. I got the tests back that told me everything I was allergic to. Everything Dairy.. I am allergic to rice of any kind. Corn. Corn meal... I can basically only eat meats and some veggies. But you know what?? I have never felt better since I cut it all out. Another thing I think you might want to ask your doctor is for a Candida test. It is a yeast infection in your intestines. It causes all those symptoms as well. I also have that because I had no Idea I was allergic to wheat. That's what caused it. I was eating and eating it . Now I am getting balanced out. You can to. Unfortunately a regular doctor can not perform these types of tests. Only a Holistic doctor can. I am not going to Lie. Insurance does not cover it. It costed about 2 grand to get the tests and correct treatment. BUT IT IS WORTH IT. I hope this helped you hun. I do not wish anyone to feel like I did. But there is hope..

mushroom Proficient

Welcome to the board, FlebbyDebby. Did you notice that this post is about 18 months old? I have not seen Woolygimp around for a while so I hope she is feeling better.:)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.