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

So Sick; Please Help!


BamaGal

Recommended Posts

BamaGal Newbie

I was diagnosed with Celiac apx. 7 - 8 years ago and have had on and off periods of problems with it. However, never this bad. I started getting sick last weekend with the classic symptoms of Celiac. It has gotten gradually worse, and I had to leave work 1/2 day Tuesday and haven't been back this week. I am so sick now that I can't even hold water on my stomach. I went to my Family Doctor Wednesday, and he put me on Flagyl. Yesterday I went to my Gastroenterologist, who specializes in celiac disease, and he added Aliana to that, so I am taking both antibiotics. I am so sick. Any ideas from anybody? I literally can't eat or drink anything and haven't left the house except to go to the Doc. Please help. Thanks for all your ideas/suggestions!


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

Make sure your medications are gluten free. That could keep you very sick. I hope you feel better soon, but go to the ER if you cannot stay hydrated due to the D and vomiting. It can be very serious.

GlutenFreeManna Rising Star

Is there anything that you changed recently that could be glutening you? It may be something as simple as a handsoap with wheatgerm oil in it or a new product that you started using. OR a product you have always used that has changed ingredients recently. Check EVERYTHING, even if you have always been fine in the past. For food, try not to eat gluten free processed products. Try to eat naturally gluten free foods and keep it to bland easy to digest foods. Baked sweet potatoes, Steamed veggies, plain chicken or turkey are good choices. Also if you want to take the time to post here what you were eating on a regular basis when you started to get sick we might be able to help you pinpont the culprit. There may be other people here that got sick from a product you were eating OR there may be a common ingredient in the foods you were eatign that is a common intolerance here. Soy and dairy are two common ones on this board that you could look at. I hope you can figure it out!

BamaGal Newbie

Thanks guys for all your suggestions. For the last week and 1/2, I have been eating very plain/blan foods. (ex. creamed potatoes, soup) Before that, I was eating a Yoplait yogurt for breakfast and a Vans gluten-free waffle, a sandwich with UDI's bread with Hillshire farm gluten-free meat, and usually homemade spaghetti or vegetables at dinner. I have been very careful. No, I haven't changed any brands of anything. Today, I ate a YoPlus Yogurt for breakfast and did fine; an hour 1/2 later I ate a plain Van's gluten-free waffle and got terribly sick before I could even finish it. I had to leave work. BTW, I work for attorneys, and as we all know they aren't very sympathetic. I called my Doctor today and he is going to work me in tomorrow. I am just miserable. I am truly hoping for some cures from you guys so that I will know where to start. Being sick for so long has gotten me almost depressed and I just don't know what else to do. Thanks in advance for your help/suggestions.

Strawberry-Jam Enthusiast

Definitely start keeping a food and symptoms diary, writing down exactly when and what you eat, and when and what you feel certain things beginning to happen. It could help you track down remaining food intolerances or allergies if you happen to have any. It could also help you figure out blood sugar or other kinds of problems you might be having.

T.H. Community Regular

Definitely start keeping a food and symptoms diary, writing down exactly when and what

I would second this.

It sounds like your docs are looking at the more serious potential issues, too, so that at least takes that worry off the table.

One thing that can help you figure out what it could be? If it were me...I would fast for a day or so. Maybe just have some water and squeeze a little orange juice into it (from fresh oranges, to make sure you have no additives, just orange, or whatever fruit you might pick). If you are still quite ill and that doesn't help, then it's likely something systemic. If you are not ill anymore when you stop eating, then it's likely something you are eating that is getting you sick, you know? If you are ill only when you drink the water...then it's likely you are having a problem with that fruit or with fructose. ;)

Also, some other possibilities, if it's something you are eating.

1. I developed an allergy/intolerance to some of the ingredients that are more common in gluten-free foods. If that has happened to you, you could be getting sick from that. Some people develop issues with gums like xanthan gum or guar gum, and that's more common in gluten-free food. Nightshades can become a problem for Celiacs, too, and potato starch is common in gluten-free foods, too. Could be developing a dairy issue, as well. I have a friend who was nauseated and ill for 2 years, with doctors checking her for everything from gut infections to cancer, and all it turned out to be was lactose intolerance. It can simply start at any time, unfortunately. Oh, and you might check out annatto sensitivity too - this is a good site for that: Open Original Shared Link

2. Sadly, you don't have to change brands for a food to become unsafe. They can change ingredients, have their suppliers change sources for THEIR ingredients, and so on. They don't have to inform us consumers, either, so a previously safe food can become unsafe for you to eat.

3. Some Celiacs seem to either develop worse symptoms to lower levels of gluten, or start reacting to lower levels of gluten, after they are gluten free for a while. This has happened to my daughter, where previously safe foods started making her sick. These were gluten-free foods, too, but she started reacting to the ones that had slightly higher levels of gluten (since 'gluten free' just means 'really, really low gluten,' it's always a possibility, if not a high one). If this is what you have, it could even be a combination of issues. You could be having low reactions to some food that has too much gluten for you now, but a low reaction might be enough to make you lactose intolerant if it was affecting the tips of your villi, and that would mean you get a double whammy of gluten issue and lactose intolerance. Joy, eh? Or even if you somehow got a nasty gluten cc moment, it could have made you temporarily lactose intolerant and you just aren't healing yet, eating lots of dairy, possibly.

4. It could be your environment - any new pets? New pet products? New construction near you? Anything else with a dust in the air? If you inhale dust with gluten, it hits your throat, and a little gets swallowed, and that means you got glutened. You'd be amazed what construction materials and pet supplies have gluten that can do that - drywall dust, plywood sawdust, some cat litter - lots of it can be an issue.

GlutenFreeManna Rising Star

Thanks guys for all your suggestions. For the last week and 1/2, I have been eating very plain/blan foods. (ex. creamed potatoes, soup) Before that, I was eating a Yoplait yogurt for breakfast and a Vans gluten-free waffle, a sandwich with UDI's bread with Hillshire farm gluten-free meat, and usually homemade spaghetti or vegetables at dinner. I have been very careful. No, I haven't changed any brands of anything. Today, I ate a YoPlus Yogurt for breakfast and did fine; an hour 1/2 later I ate a plain Van's gluten-free waffle and got terribly sick before I could even finish it. I had to leave work. BTW, I work for attorneys, and as we all know they aren't very sympathetic. I called my Doctor today and he is going to work me in tomorrow. I am just miserable. I am truly hoping for some cures from you guys so that I will know where to start. Being sick for so long has gotten me almost depressed and I just don't know what else to do. Thanks in advance for your help/suggestions.

It looks like you are eating a lot of processed foods. If you can, you relaly should switch to a whole foods diet for a while. Some people react badly to Udi's bread. It's not neccessarily a gluten reaction but some people just don't do well with it. I would suspect the Van's Waffles could be a bad batch or something--I don't know if they make them in a dedicated gluten-free facility but I know that company also makes whole wheat waffles. The yogurt could be a problem for you if you have a dairy intolerance. The yogurt you ate is also possibly a problem because it contains a lot of additives--any one of which you may be sensitive too. Even if you never had a problem with the yogurt before now it could be that goign gluten free has brought out a sensitivty you never knew you had. Again these are just possible other intolerances...

Another question for you (sorry if this was already answered)--did you buy a new toster for gluten free waffles and bread? Is there any chance someone--a visitor or guest could have used your gluten-free toster for regular gluten bread?


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



Celiac.com Sponsor (A8-M):



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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,406
    • Most Online (within 30 mins)
      7,748

    Kbradway
    Newest Member
    Kbradway
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • 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!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.