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

By BamaGal
in Coping with Celiac Disease

Recommended Posts

BamaGal Newbie
BamaGal
Posted

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
eatmeat4good
Posted

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
GlutenFreeManna
Posted

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
BamaGal
Posted
  • Author

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
Strawberry-Jam
Posted

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
T.H.
Posted

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
GlutenFreeManna
Posted

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.

Go to topic listing

  • 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. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.