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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,420
    • Most Online (within 30 mins)
      7,748

    maggie23
    Newest Member
    maggie23
    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

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.