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

What's Wrong With Me!


okgrace

Recommended Posts

okgrace Apprentice

Hi Everyone,

I need help and to vent! My stomach is killing me all the time. I ate a gluten free Namste spice cake with cream cheese frosting (homemade) last Tuesday and was horribly ill for 2 days. My stomach was finally feeling 100% Monday and Today I am having D again. The pains I was having last week were awful, sharp and stabbing. My massage therapist thinks it's my gallbladder or related to nerve impingment in my neck since they all run on the same nerve. (Not that she can diagnosis this stuff).

Does anyone else get overheated quickly and have D and headaches that become migranes if they aren't treated quickly?

I stumbled on to the gluten free thing through my dd who was diagnosed in Jan. I stopped eating gluten to be supportive of her. We have also stopped nightshades, soy, dairy, and some lectins.

I feel like I can't eat anything that I don't prepare from scratch at home. I need to know what I should do next. My dd is doing really well and is not experiencing the same symptoms. My husband is convinced it's the water or in my head because who develops food allergies at 29.

Thanks

Kristan


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
My husband is convinced it's the water or in my head because who develops food allergies at 29.

I became intolerant to pretty much *everything* at 31.

Foods, chemicals, environmental triggers, etc. Prior to that....I had no problems with anything.

I have several issues contributing....although I do not have Celiac.

tom Contributor
Namste spice cake with cream cheese frosting (homemade)

I'm dairy-free too and don't know if I've seen a DF version of a cream-cheese frosting.

What's in it?

MyMississippi Enthusiast

You need to see a doctor if your stomach is killing you all the time. :o

Or you can start an elimination diet to see if a particular food is the culprit. Or,You might want to just drink water for a 24 hour period and NO food at all - (if you have good health) and see what happens.

I got multiple food allergies when I was in my 40's --- so it can happen anytime.

okgrace Apprentice

The cream cheese frosting wasn't dairy free. This was the first time I had allowed dairy in several months becuase I want my dd gut to heal. She was experiencing symptoms that weren't going away so I cut out all the typical triggers. I never had a problem with dairy before this. I have only been experiencing this for a few months.

This is gross, but when other people get D does it seem to be unstopable without an anti-D. Is it good to take and anti-D or just let it run it's course (which could be 24 hours or longer)?

Thanks for the response, I really appreciate it.

Kristan

okgrace Apprentice

I was just thinking.... Some of you mentioned that you have environmental allergies. How do you go about figuring out what those are. I work for a hospital and most of the time I work out patient at schools and childcare centers, but about once a week I work inpatient. I am usually ill after working inpatient shortly after I get home or even before i leave work. I am constantly using handsanitizers and washing my hands. I have wondered if there soap makes me sick, but I am sure there are lots of other chemicals that I am exposed to there. I have also wondered if it's just in my head since I enjoy working with the patient's, but acute care isn't really my thing.

Just don't know anymore,

Kristan

Marleigh Rookie

Several things come to mind for me...if the cake was sugar-free also (by any chance), the artificial sweeteners will give me violent D reactions like you described. Not necessarily Splenda and things that you put in drinks, but the "sugar alcohols" (malitol, etc) that they put in sugar-free baked goods.

Another idea is MSG or a preservative, or high fructose corn syrup. Either one of those will cause intestinal symptoms for me, in the right doses.


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



Celiac.com Sponsor (A8-M):



home-based-mom Contributor
I was just thinking.... Some of you mentioned that you have environmental allergies. How do you go about figuring out what those are. I work for a hospital and most of the time I work out patient at schools and childcare centers, but about once a week I work inpatient. I am usually ill after working inpatient shortly after I get home or even before i leave work. I am constantly using handsanitizers and washing my hands. I have wondered if there soap makes me sick, but I am sure there are lots of other chemicals that I am exposed to there. I have also wondered if it's just in my head since I enjoy working with the patient's, but acute care isn't really my thing.

Just don't know anymore,

Kristan

I have a customer with extreme mold sensitivity. She was on disability for a couple of years before she got enough of her health back that she could return to work.

For some reason (she told me but I can't remember) she recently wound up in a local ER where upon her condition got worse :o instead of better! The reason (confirmed by the attending ER physician) was the *mold in the ceiling caused by leaky pipes!* The tiles were actually sagging and discolored.

Not only that, but he said that because of lack of maintenance it was common in hospitals! :angry:

Just thought I'd pass that on to give you a place to start looking.

Rosewynde Rookie
My husband is convinced it's the water or in my head because who develops food allergies at 29.

Anyone can develop food allergies at any time. All it takes is to have something trigger it and you get stuck with it. My trigger was a difficult pregnancy. I've read enough on here to know that many of us developed these problems latter in life. I hope you can convince your husband of that. If your feeling rotten there is some cause and it is not all in your head. Do be aware though that worrying about things only makes the feelings worse as it stresses your body.

okgrace Apprentice

Thanks for the input from all of you. Our hospital has gone through some major renovations in the last couple of years. It is a small community hospital that is growing quickly so unlike most hospitals it seems to have had money to maintain itself fairly well. Parts of the hospital are old and I am sure are not up to par. I wonder about the air quality system. How often are the filters changed etc. I have no idea how it works, but I feel like the air is part of the issue.

The cake mix does not have artificial sweetners, although my sister may have used xylitol to sweeten the frosting, not sure. The cake mix is free of gluten, wheat, soy, nuts, potato, corn, dairy, and casein. It is sweetened with cane juice. I just thought about the fact that my sister uses xylitol frequently to sweeten things and I have a hard time with gum that is sweetened with it. Very interesting!

I am trying not to worry to mych and now that I am feeling better it's a bit easier. My husband asked this evening if I had pickrd up a water test kit. Arrrrrrrrhhhhhh!

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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • 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.