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

Ideas To Speed Up Recovery From Contamination?


sydneysmommy

Recommended Posts

sydneysmommy Apprentice

Lately I have been VERY sensitive to any kind of contamination or cross contamination. Meaning, I am showing immediate and obvious/strong ill reactions after the slightest ingestion of gluten. Just the tiniest flake of wheat germ or slight dusting of it on the table-to-my-food-in-my-mouth kind of a thing. It NEVER used to be like that. I have 2 kids and a husband that do NOT eat gluten free and we've never had to worry about cross contamination but now it's terrible bc I stress about cooking their seperate pot of spaghetti (yes, my husband still insists even though we now have VERY good spaghetti...kids don't mind). And I've had to get a new toaster just for my bread.

I think stress has something to with my new 'sensitivity'. Because I was diagnosed 10 years ago and have NEVER been this reactive to small amounts. I get that I've probably had underlying issues as a result of cross contamination, which is probably just as dangerous and this physical reaction is likely a blessing in disguise to get me to really pay attention.

Well I AM!!!

My question is... how to I DEAL with the physical symptoms in the meantime? I feel like I cannot get back on my feet for weeks. (magic number seems to be 2 weeks after contamination as long as I am VERY strict).

Fatigue, cramps that are really bad one day and totally fine the next, then hit me bad the next, IBS which is like PMS of the intestines... can't make up its mind if I have constipation or the opposite, migraines and tension headaches, BRAIN FOG, gas (Lord help me), hormonal fluctuations which cause this 30yo to break out like a 14yo and also I'll miss my period entirely. I am also a runner and am training for a marathon- and my joints begin hurting TERRIBLY (hips and knees) so this cripples my long runs for two weeks which is uncool.

HELP.

I need a super pill!!!!

Any ideas?

I need help trasitioning and smoothing over these horrible effects.

I already practice a VERY strict regimen of eat well ----> exercise well ----> sleep well. Purely organic whole foods and a dynamic round of exercise and no matter what I sleep about 8-9 hours a night. That has always worked for me to stay strict with those 3 elements but when I get glutened my LIFE is upside down.

:(


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

My glutenings used to be like that. Now that I am super gluten free my glutenings only last a day or so, but that is only glutening from very small amounts of gluten like a tiny bit of contamination of a gluten free food. We had to go to a gluten free household years ago. We just couldn't do it without me getting sick. Probiotics will help some. I hope that you can get your family to cooperate.

padma Newbie

Hi. I just came across a new "cross-contamination" definition which is much broader and may explain some of our symptoms.

I came across this article by Donna Gates about coffee and gluten reactions. .. there is a sinus-gut connection, added to neurodegeneration, inflammation and cross-reactive inflammatory triggers (something new to me):

Open Original Shared Link[uNIQID]

"And solid claims have been made that coffee reduces risk of Alzheimer's, dementia, and Parkinson's. (5) However, when working with a permeable gut, it is essential to consider the latest research regarding gluten sensitivity.

There is such a thing as gluten-associated sensitivity and cross-reactive foods that trigger a systemic gluten-like inflammatory response. So far, Cyrex Labs is the only testing facility that checks for the appropriate antibodies. Cyrex researchers have discovered that coffee has the highest rate of cross-reaction with gluten. Meaning, it tops dairy as a cross-reactive inflammatory trigger.

Perhaps a little less surprising is that dairy shows up as commonly cross-reactive because its protein structure is so similar to gluten. An array of testing for cross-reactivity can determine which foods will trigger a gluten-sensitive response in your body. (6) It is important to build the healthy microflora in the gut with coconut water kefir or probiotic beverages <or acidophilus> in order to lower the inflammatory response.

What does a permeable and inflamed gut have to do with brainpower and neurodegeneration?

Well, a lot. Think of the gut and the brain as best friends that are constantly communicating via the vagus nerve. Another reason why they are such good friends is that they are made of the same stuff, neurons and glial cells.

When glial cells get the inflammatory signal, a sort of excited frenzy of cell death occurs. If these episodes of cell death happen frequently, irreversible neurodegeneration follows. In short: fire in the gut, fire in the brain - both have the potential to lead to neurodegeneration.

Therefore, while studies have observed a positive link between coffee and a reduced risk of Alzheimer's, dementia, and Parkinson's, if you have any kind of systemic inflammatory condition, gut dysbiosis, an autoimmune condition, or food sensitivity, consider the most recent research that shows that the proteins in coffee are cross-reactive with gluten antibodies." footnote: Open Original Shared Link

I have found a link from my nose to my gut. This is an example of how the different parts of our body are connected. When I find my nose running, like yesterday after I was exposed to beach fire smoke, today my sinuses are inflamed. I am not digesting food well today. Perhaps the 1/4 cup coffee I had yesterday was connected to my hypersensitivity today. ???

I have a totally gluten free/dairy free kitchen and have been staying off of "gluten free" foods, except for a few that I am re-testing one at a time. I was having a reaction like you, but I was not figuring out where it was coming from. I now know some of the products I was using have been causing a reaction.

The protocol I have been successfully using is to drink mangosteen juice daily as it is anti-inflammatory, anti-biotic and anti-fungal. It has helped my gut re-balance faster than anything. I also take chlorella 1 tsp 2 X day half an hour before the juice. I also take a powerful acidophilus (TheraLac) at night. Occasionally I do an Ayurvedic panchakarma intestinal cleanse (Dr. Lad's book) every 4 - 6 months. I use bioidentical hormones daily. This combination with strict avoidance of gluten, has allowed me to feel well most of the time now and my recovery times have gotten very short if I do get into a little gluten unknowingly. I, too, have my own toaster in case anyone brings wheat bread into the house. I have quit eating gluten free bread for now until I figure out if it is something I am reacting to.

Lately I have been VERY sensitive to any kind of contamination or cross contamination. Meaning, I am showing immediate and obvious/strong ill reactions after the slightest ingestion of gluten. Just the tiniest flake of wheat germ or slight dusting of it on the table-to-my-food-in-my-mouth kind of a thing. It NEVER used to be like that. I have 2 kids and a husband that do NOT eat gluten free and we've never had to worry about cross contamination but now it's terrible bc I stress about cooking their seperate pot of spaghetti (yes, my husband still insists even though we now have VERY good spaghetti...kids don't mind). And I've had to get a new toaster just for my bread.

I think stress has something to with my new 'sensitivity'. Because I was diagnosed 10 years ago and have NEVER been this reactive to small amounts. I get that I've probably had underlying issues as a result of cross contamination, which is probably just as dangerous and this physical reaction is likely a blessing in disguise to get me to really pay attention.

Well I AM!!!

My question is... how to I DEAL with the physical symptoms in the meantime? I feel like I cannot get back on my feet for weeks. (magic number seems to be 2 weeks after contamination as long as I am VERY strict).

Fatigue, cramps that are really bad one day and totally fine the next, then hit me bad the next, IBS which is like PMS of the intestines... can't make up its mind if I have constipation or the opposite, migraines and tension headaches, BRAIN FOG, gas (Lord help me), hormonal fluctuations which cause this 30yo to break out like a 14yo and also I'll miss my period entirely. I am also a runner and am training for a marathon- and my joints begin hurting TERRIBLY (hips and knees) so this cripples my long runs for two weeks which is uncool.

HELP.

I need a super pill!!!!

Any ideas?

I need help trasitioning and smoothing over these horrible effects.

I already practice a VERY strict regimen of eat well ----> exercise well ----> sleep well. Purely organic whole foods and a dynamic round of exercise and no matter what I sleep about 8-9 hours a night. That has always worked for me to stay strict with those 3 elements but when I get glutened my LIFE is upside down.

:(

  • 3 weeks later...
naiiad Apprentice

I take mangosteen juice daily a long with probiotics and alpha lipoic acid. This combination has done wonders for me. Good luck :)

  • 4 weeks later...
SilverSlipper Contributor

This may not help, but our GI prescribed hyoscyamine for my daughter to take whenever she became ill from a gluten infraction. Typically, a reaction knocks her out for about 7 - 10 days. The first two are usually in bed with stomach cramps, so severe she can't walk or sit straight. She literally moans in her sleep. The diarrhea is usually the main problem and occasional vomiting. She's a very, very sick child during those times. The pain is the worst and what I sought help to relieve.

We've tried it twice now and it does seem to be a magic pill. The first time, she ate half a bagel. I had bought several bags of gluten-free ones and somehow picked up one that wasn't. My husband made breakfast, didn't notice it and she ate a wheat bagel. The reaction came about thirty minutes later and she was vomiting at school and unable to stand. She was doubled over in pain but within an hour of taking the pill, it stopped. She took it for two days and was able to move around without incident.

Because I'm a natural skeptic, I decided that it worked so well because she vomited everything up.

A couple of weeks ago, we went to a restaurant to celebrate my step-mom's birthday. The chips on the table had obviously been fried with something else because halfway through the meal, she became paler and paler and finally doubled over and started crying. Same thing, we got home, took the medicine and within a couple of hours she was back on her feet and able to participate in family events.

Technically, it's not supposed to prevent diarrhea, but she didn't have diarrhea either time.

She's not considered a super sensitive, but her sensitivity is quite high. If you're thinking of medication, it might be worth a try.

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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    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

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.