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

How Does Your Body React When Ingested Gluten


sickly

Recommended Posts

sickly Newbie

I have not been diagnosed with celiac, gluten intolerance. I have tried to be gluten free for months now, but seem to be getting sicker and sicker.

I just have a few questions for the people who have been diagnosed with Celiac or gluten intolerance.

When you have an "attack" what happens to your body? How long does it take to feel better and what do you do, if anything to feel good again?

Do Celiac's have more "D" than "C".

I have been sick pretty much on a constant basis for 5 years. In the past 6 months have been very, very bad.

I have a reason to believe by reading alot of the posts that I may have something else and my doctors are just "guessing" on what is happening to me.

Thanks,

Sickley :(


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



Celiac.com Sponsor (A8-M):



cyberprof Enthusiast

I have not been diagnosed with celiac, gluten intolerance. I have tried to be gluten free for months now, but seem to be getting sicker and sicker. Sorry to hear that. Sometimes after gluten is removed people get more sensitive to small amounts or have other intolerances that show up once gluten is out of the system.

I just have a few questions for the people who have been diagnosed with Celiac or gluten intolerance.

When you have an "attack" what happens to your body? How long does it take to feel better and what do you do, if anything to feel good again? I personally get nausea, burp a lot, have a lot of D and often, and get canker sores in my mouth. Sometimes the burping starts when I'm still eating. After getting glutened, I try to drink a lot of tea, mint tea is best. I also take pepto bismal, which helps calm my stomach and - say if I'm at work - get me through the day. It takes me two or three days to get to normal but I think that might be different for everyone.

Do Celiac's have more "D" than "C". I think so, but that's just a guess. Some people just have C instead.

I have been sick pretty much on a constant basis for 5 years. In the past 6 months have been very, very bad.

I have a reason to believe by reading alot of the posts that I may have something else and my doctors are just "guessing" on what is happening to me. It's possible that you might have something else. It could be thyroid problems, colitis or chron's, other intolerances (soy, dairy, egg are probably the most common; also corn), diabetes.

katrina500 Rookie

I have not been diagnosed with celiac, gluten intolerance. I have tried to be gluten free for months now, but seem to be getting sicker and sicker.

I just have a few questions for the people who have been diagnosed with Celiac or gluten intolerance.

When you have an "attack" what happens to your body? How long does it take to feel better and what do you do, if anything to feel good again?

Do Celiac's have more "D" than "C".

I have been sick pretty much on a constant basis for 5 years. In the past 6 months have been very, very bad.

I have a reason to believe by reading alot of the posts that I may have something else and my doctors are just "guessing" on what is happening to me.

Thanks,

Sickley :(

Hello, I think people react differently when they have gluten. For me, it seems to take a few days and then I become extremely fatigued and have dizziness, headaches and muscle pain. I used to get really stressed about it which made me worse of course, now I accept that I've done something wrong and try and get back on track knowing that it will go away again. Sometimes it takes weeks to go away, other times it takes just a few days. I have found that sleep helps me get over it quicker and avoiding alcohol.

You say you've not been diagnosed with Celiacs, have you had a negative test via a biopsy?

T.H. Community Regular

I have been sick pretty much on a constant basis for 5 years. In the past 6 months have been very, very bad.

If you don't mind my asking, what are your symptoms? Many people here have other conditions as well, and might be able to offer some paths to explore if they knew a few more details.

For myself...I got sicker when I went off gluten, actually. For me, this was the reason:

1. I'm allergic to sugar cane, which is in less processed form in most of gluten-free processed foods, which meant I was suddenly getting a lot more of my allergen. I've seen this happen to others who are mildly allergic to a food that they might not normally get, but get a lot of in gluten-free foods. Like allergies to tapioca, potato (potato starch), eggs, other grains/flours. Also people can have issues with xanthan gum or the other gums that cause a lot of gut pain.

2. I turned out to be more sensitive to gluten than the average. The more I stayed away from gluten, the more I noticed reactions to it, but most gluten-free foods still had more gluten than I could tolerate, so they'd make me sick. I dropped to a very whole foods/unprocessed diet.

I know some others have food issues that become more prevalent after going gluten free, and I'd say this one thing: if you have noticed a change since going gluten free, then it is likely that SOMETHING in your diet is part of the problem, even if it's not gluten. Yes, there is coincidence, sometimes, but the odds are better that if you changed your diet and had changes in your health, that your diet is affecting your health. So either you're eating more of something now that you didn't use to, or you're reacting more to something, now that you're gluten free. There's a few other possibilities, like some organ and how it's processing your food, but still, diet seems like it's doing something to you, yeah?

Also, I know many here have worse reactions when they are low on D and B vitamins, so it might be worth getting those levels tested.

As for symptoms, these are mine:

vertigo and dizziness, bad enough to cause vomiting and nausea - gluten

Difficulty thinking clearly - gluten

memory issues - gluten

Gut pain - allergies, no gut pain with gluten

D with allergies

C with gluten

headaches and aches and pains - with allergies and gluten, both

There's a bunch of other issues with gluten, too, depending on how frequently I get glutened in a row: insomnia, emotional control problems, depression, sounds and light begin too loud and bright, clumsiness, feeling hungry a lot, etc...

love2travel Mentor

I have NO reaction when eating gluten which can be scary as I would have no clue what damage is being done inside. So, I rarely eat out as that makes me nervous.

When I was on my gluten challenge I had a blast, sad to say. It was a wonderful time of eating fabulous gluten-laden stuff. In fact, I felt better on gluten than off. I've been gluten-free for a month now but am still having a few withdrawal symptoms such as headaches, fogginess and such. Nothing that bad - not enough to really complain about.

So, I do feel bad for those of you who have to suffer so much when accidentally glutened. I am indeed thankful that so far I have not had to go through that. I still find it difficult being a silent celiac as nothing alerts me to possible CC or whatever. :huh:

sickly Newbie

Hello, I think people react differently when they have gluten. For me, it seems to take a few days and then I become extremely fatigued and have dizziness, headaches and muscle pain. I used to get really stressed about it which made me worse of course, now I accept that I've done something wrong and try and get back on track knowing that it will go away again. Sometimes it takes weeks to go away, other times it takes just a few days. I have found that sleep helps me get over it quicker and avoiding alcohol.

You say you've not been diagnosed with Celiacs, have you had a negative test via a biopsy?

Yes, I have. I am actually going today for another endoscopy, but I am sure she won't find any anything. According to what I have read you have to have been eating gluten for awhile prior to the test. I have not. Something my G.I. neglected to tell me. I am so done with this one.
sickly Newbie

Thanks for everyone's comments.

My symptoms are;

Nausea

Fullness in Stomach

Completely Exhausted

Depressed

Cannot stand the smell of anything

Have no appetite. When I do eat something I have continual burping and acid. Sometimes so bad my mouth gets burnt.

My Naturopath says I have dysbiosis and chronic constipation.

I am taking digestive enzymes, Vitamin B Complex, Adrenal Gland Vitamins, Iodine. I went for a 2nd opinion and the doctor put me on Metronidazole. Only been on it for a few days.

I have avoided any type of gluten, pretty much eat rice noodles, cooked veggies and some chicken or fish. I do not drink alcohol. I have changed my whole way of eating.

I just wasn't sure that for instance if I ate some gluten today, how long might it take for the "illness" to hit.

The doctors say, "don't worry it isn't life threatening". Yeah, right!! Well it has completely ruined my life and is effecting everyone I know.

Anyway, enough ranting! Thanks for listening.


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



Celiac.com Sponsor (A8-M):



Marz Enthusiast

Thanks for everyone's comments.

My symptoms are;

Nausea

Fullness in Stomach

**Completely Exhausted**

Depressed

Cannot stand the smell of anything

Have no appetite. When I do eat something I have continual burping and acid. Sometimes so bad my mouth gets burnt.

**Completely exhausted** - this is a classic symptom of celiac disease. Some celiacs have no symptoms, except fatigue.

I also had a lot of "stomach" problems when I was eating gluten - nausea, feeling full quickly while eating supper, lack of appetite. I also had alternating d and c. The nausea was bad though - most evenings I'd eat supper and then frantically keep myself occupied washing dishes or something, trying to keep my mind off the constant nausea. It was worse at night for some reason.

My gastro specialist said I had non-ulcerative inflammation - dyspepsia - caused by delayed emptying of the stomach. The d/c was "IBS". Lo and behold, going gluten free cleared up *all* symptoms.

I still had episodes of d however, because I was still eating *soy* which is the bane of my existence.

So my advice is to keep a diary, and see if there's any pattern of food causing worse nausea. For a while I found eating the nightshade family of plants caused intense nausea an hour or three after eating. It's since gone away, but have a look at cutting out potatoes, tomatoes, peppers, eggplant for a day and see if it helps.

You can look into doing an elimination diet to see if other food groups are causing problems.

Finally you might be sensitive to milk/lactose until your intestine heals itself.

You might want to only eat whole foods/unprocessed foods for a week or two, and see if you find relief from symptoms. Then slowly add items back and see if anything is bothering you - it may have low levels of gluten than don't bother most celiacs, but are affecting you.

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

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

    • Total Members
      132,872
    • 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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • SamAlvi
      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
      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
      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
      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
      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.