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How Does Your Body React When Ingested Gluten


sickly

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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 :(


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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.


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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.

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      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
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