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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Kirsty40

Symptoms caused by gluten intolerance?

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Can you tell me if my symptoms can be caused by gluten intolerance?

  • burning sensation in mouth (gums, lips)
  • quickly rising blood sugar after eating gluten, then high heart rate
  • I only eat gluten once a day. Later in the day, blood sugar won’t rise as much, but also goes down too much, despite eating a good combination of protein, carbs, veggies. No matter if I eat less or more.
  • burning esophagus
  • burning stomach
  • stool that passes so quickly that I have bad cramps for a while afterwards and feel nauseous
  • often joint pain
  • itching
  • burning skin
  • constipation
  • ringing in my ears
  • nightmares 
  • stiff muscles, especially in my arms
  • anxiety after eatng gluten
  • temper tantrum after eating gluten (crying, anger, anxiety, ocd thoughts)
  • hunger after eating gluten; sometims for hours, even at night
  • shortness of breath/air hunger/not being able to breathe in deeply
  • yawning

I am feeling so desperate. I had blood tests and biopsy and it showed no celiac disease. I do have symptoms of itching, burning mouth, high heart beat, nausea shortly after eating gluten, so I know I am sensitive. I tried to stop gluten and then got such bad hypoglycemia, that I did not know how to continue. So I tapered slowly. But in the meantime, not really getting better. The hypoglycemia is now worse and seems to have to do with my hormonal cycle, which is also messed up. Tryng to stop gluten actually worsened pre-existing mild hypoglycemia. Also when teying to stop, I felt very dizzy, as if my blood sugar was too low all the time (couldn’t measure, no meter back then). I got very anxious, a lot of itching, my menstrual cycle got messed up, pain in my calves and cramps in my feet. When I cut out a small bit, I had it milder. Especially the dizzyness, brain fog and not being able to think clear got better.

Can I expect the hypoglycemia to get better? 

I am so fed up with feeling sick all the time. But I am afraid too, what will hapoen when I stop, as I know the last time I tried was bad. 

Thanks in advance for taking the time to answer my questions.

Kirsty

Edited by Kirsty40
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Could be NCGS Non Celiac Gluten Sensitivity, or something else. Try a food diary, write down everything you eat, how you fix it, seasonings etc. Then record how you feel afterward. Knock your diet down to a whole foods only diet, nothing processed. Then eat simple meals with only say 3-7 base foods no seasonings,  This way you can figure out if some ingredient is causing IE a intolerance to another item in your food supple like corn, soy, dairy etc.   Try eliminating foods and not eating certain ones for 3-4 days then trying once then removing again and seeing if they might be the culprit. Here is a bit of a summary thing I did on NCGS, Other members might be able to break it down better or give better advice.

1. Acne, Flushed Skin, or Rashes
Non-Celiac Gluten Sensitivity can manifest itself as a chronic skin condition such as a rash, acne, or red/flushed cheeks, but these conditions could also be hormonal. On the other hand Celiac disease also has Dermatitis herpetiformic or DH, which is characterized by rashes and chronically itchy, elbows, knees, buttons, and back.

2. Distended Stomach or Bloating
A distended or bloated stomach applies especially after gluten consumption and is a fairly clear sign of gluten sensitivity. A distended stomach is also characteristic of malnutrition as well of celiac disease.

3. Diarrhea, Gas, or Constipation
These three  symptoms can simultaneously occur after eating gluten and may be a sign of intolerance because, especially the former, is a way for the body to expel harmful allergens or other substances. Often, diarrhea (frequent loose or liquid stools) occurs with gas, resulting in a “feeling of a full or tight abdomen” as put by the NFCA. Constipation, essentially the antithesis of diarrhea, is also a symptom of non-celiac gluten sensitivity and is characterized by infrequent, hard, painful bowel movements from lack of physical activity or poor diet, namely a diet high in refined carbs rich in gluten. This can be made worse if one has a magnesium deficiency, does not get though hard fiber, or drink enough water. All of which can be made worse by the feeling of bloat/gas making one feel too full to need to drink or eat high fiber foods.

4. Brain Fog or Migraines
Brain fog is a major characteristic of non-celiac gluten sensitivity. Chronic or debilitating migraines goes hand in hand with the idea of brain fog and results in depression or irritability. These again can be made worse by deficiencies, like B-vitamins.

5. Joint Pain or Numbness in Extremities
Tingling, pain, or numbness in the joints or extremities is abnormal and should be a clear sign of a health problem like gluten intolerance or celiac disease. Colloquially, this tingling is described as “pins and needles” or a limb being “asleep.” If this happens frequently for no apparent reason, it could be a sign of gluten intolerance. Again these can help be alleviated and be made worse by deficient in Magnesium, B-vitamins

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I already eat only non processed. Not too many ingredients, because of other intolerances. Only the reaction after eating gluten is so pronounced. Just wondering if all those weird symptoms are from gluten. Thank for th answer Ennis.

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I exlored them. But wondering for the total of my symptoms if that all sounds very gluten like. Just feel so alone with all these weird, nasty symptoms.

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Yes, many of your symptoms seem gluten related. 

This post had the same prob as you with the hypoglycemia, where it got worse gluten-free. 

 

 

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As for the hypoglycemia, it seems, with some people it gets better after gong gluten free, with others it got worse. 

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4 minutes ago, Kirsty40 said:

As for the hypoglycemia, it seems, with some people it gets better after gong gluten free, with others it got worse. 

Mine got better, but it took almost a year for me to be good enough I stopped using a meter. I just found my meter the other day and it brought back all the memories. I had forgotten about it.

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I often get rapid heartbeat after meals that raise the blood sugar. But especially so after eating gluten, which is only once a day now. Sometimes I have days where it won’t get up or falls too fast, other days it gets and stays to high. In general, the more inflamed or stressed (usually from my cycle) I am, the more the blood sugar shoots up. Most important is that when I stop all gluten, it won’t get worse. I am asking a doctor for help. Endocrinologist did not take it seriously. I often have blood sugar problems without extreme values. The gastreneterologist did not think gluten was the thing to stop, but wanted me to try anti allergy medication, which made me more ill. Now I am going to see a holistic doctor, who is specialised in adrenals, female hormones and food issues. Maybe she can have a chat with my gastroenterologist. I need the backup of a doctor.

Victoria, I am so glad you got over it. I don’t care if it takes a year. As long as the stomach and gut problems and itching subside. 

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Kirsty, do you have copies of the blood tests & biopsy reports? If not, get them. It's always a good idea to get copies of tests so you can refer to them later. If you have them or get them, you could post them here. It makes a difference whether you were given the full celiac panel and how many biopsies were taken from what portion of the small intestine. Also, why did you have a biopsy? Did the doc suspect celiac? What was the reasoning for doing that?

Honestly, a   lot of your symptoms when you stop gluten sound like gluten withdrawal. It's something most of us experienced. Use the search box here & put in gluten withdrawal. You get a ton of threads.

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Good luck with the holistic doc. I saw a naturopath for months who set me on a good path until I couldn't afford all the supplements anymore. Be careful with that. I found nothing helped me more than decent whole food and good quality vitamins. And of course sleep and lots of water!

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1 hour ago, Kirsty40 said:

I often get rapid heartbeat after meals that raise the blood sugar. But especially so after eating gluten, which is only once a day now. Sometimes I have days where it won’t get up or falls too fast, other days it gets and stays to high. In general, the more inflamed or stressed (usually from my cycle) I am, the more the blood sugar shoots up. Most important is that when I stop all gluten, it won’t get worse. I am asking a doctor for help. Endocrinologist did not take it seriously. I often have blood sugar problems without extreme values. The gastreneterologist did not think gluten was the thing to stop, but wanted me to try anti allergy medication, which made me more ill. Now I am going to see a holistic doctor, who is specialised in adrenals, female hormones and food issues. Maybe she can have a chat with my gastroenterologist. I need the backup of a doctor.

Victoria, I am so glad you got over it. I don’t care if it takes a year. As long as the stomach and gut problems and itching subside. 

Have you tried eliminating high glycemic foods? Fruits, added sugars, starchy grains, potatoes. etc? Also adding in slow digesting fibers and fats can prevent insulin spikes, MCT oil is also known to help and protein. Many find consuming nuts and seeds higher in fiber early on in the meal or before a meal can slow down insulin responses and prevent spikes. I always tend to eat a hand full of whole shell pumpkin seeds, hemp seeds, cocoa nibs, etc. while fixing my food, this gets me starting to feel fuller sooner, and seems to help in over all down the road. I know I had some references somewhere to these. I know I read somewhere about the antioxidants in in whole shell seeds like pumpkin and hemp also helped the body regulate insulin levels.

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Yes I eliminated high glycemic foods. Eating only small amounts of carbs. No fruits, added sugars, starchy grains. Eating lots of fibrous veggies. Eating olive oil, as I don’t seem to tolerate the saturated fats or MCT oil. Allergic to nuts and seeds unfortunately.

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I get heart palpitations from milk. I had to drop corn and milk besides gluten. Any of your intolerance sneak in?

Heart palpitations signal milk to me, but as you hear we are all different.

Good luck

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On 10/21/2017 at 9:34 PM, Kirsty40 said:

I often get rapid heartbeat after meals that raise the blood sugar. But especially so after eating gluten, which is only once a day now. Sometimes I have days where it won’t get up or falls too fast, other days it gets and stays to high. In general, the more inflamed or stressed (usually from my cycle) I am, the more the blood sugar shoots up. Most important is that when I stop all gluten, it won’t get worse. I am asking a doctor for help. Endocrinologist did not take it seriously. I often have blood sugar problems without extreme values. The gastreneterologist did not think gluten was the thing to stop, but wanted me to try anti allergy medication, which made me more ill. Now I am going to see a holistic doctor, who is specialised in adrenals, female hormones and food issues. Maybe she can have a chat with my gastroenterologist. I need the backup of a doctor.

Victoria, I am so glad you got over it. I don’t care if it takes a year. As long as the stomach and gut problems and itching subside. 

Hi Kirsty,

Gluten messes me up in a lot of different ways, some of which I recognise in your first list. You can find a massive list of symptoms associated with celiac here: https://glutenfreeworks.com/gluten-disorders/symptom-guide/ and it may be that some of your other symptoms can be found there. It's also worth searching this forum as it's been going for a long time, in internet years at least. 

It certainly messed with my blood sugar and like you I'd take tests which didn't reach the extreme values, but that didn't stop the symptoms. The only way I realised this was when I removed it from my diet, for other reasons and found that a load of different other symptoms also resolved. 

After this happened I then went back on to gluten for a test, a gluten challenge. My symptoms came back, but my blood test and endoscopy were negative for celiac. My consultant told me to avoid gluten for life. 

In your case you need to decide whether to push for more celiac testing or not. If not, please consider fully excluding gluten. My own experience is that it's not something that you can have a little of and get a health benefit, you are still engaging your auto immune system. Obviously if you're experiencing extreme symptoms when you remove it you should do it in consultation with your doctor, but maybe if you could just get through those difficult first few days you may experience relief from some of your symptoms?

Best of luck :)

matt

 

 

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Hi Matt,

So you say your hypoglycemia resolved going gluten free. In my case, it got worse trying to get off. Now my cortisol, progesterone and estrogens are low. The extreme stress from trying to cut it out of my diet offset my menstrual cycle. That leaves me with a lot of anxiety, blood sugar issues worsen at specific times of my cycle. So I want the doctor to stabilize me hormonally, as far as that goes while being on gluten. I agree that I’d have to fully stop eating gluten. Not just a bit. Even though I removed all gluten except 1,5 slices of bread, I still experience the above symptoms. Some of those symptoms might be because of the hormonal situation. But they always worsen after eating gluten. My appointment with a hormonwise doctor is in 10 days. Seems such a short time, but hate waiting.

Kirsty

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How long were you fully gluten free for Kirsty?

 

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Hi Matt,

I was never fully glutenfree. Tried it and then got such bad hypglycemia. My blood sugar started to drop dangerously low every hour. After that I decided to take it step by step. I had only 2 slices of bread left. But still have 1,5 slices of bread left. Right now I fall asleep after meals with only tiny amounts of carbs, even if that is non gluten. This is because my cortisol has gotten too low. And my female hormones as well. This all got this bad upon tryng to cut out gluten. As there is no doctor yet to support me in this, it is too dangerous to continue on my own. 

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You mention low cortisol. Did you get tested for Addison's disease?

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48 minutes ago, Kirsty40 said:Hi Matt,

I was never fully glutenfree. Tried it and then got such bad hypglycemia. My blood sugar started to drop dangerously low every hour. After that I decided to take it step by step. I had only 2 slices of bread left. But still have 1,5 slices of bread left. Right now I fall asleep after meals with only tiny amounts of carbs, even if that is non gluten. This is because my cortisol has gotten too low. And my female hormones as well. This all got this bad upon tryng to cut out gluten. As there is no doctor yet to support me in this, it is too dangerous to continue on my own. 

Ultimately you know your body better than anyone and I would not want to encourage you to do something which you feel would endanger you. From the outside it seems to me that if you react strongly to reducing gluten then you may well have a problem with it, either celiac or ncos and neither of those groups should consume any gluten whatsoever.

I think the problem with tapering down is that you risk  the bad effects with none of the good. You disrupt your body but you don't give it the break from gluten that would enable it to begin repairing itself. 

The gluten could be the source of the other issues and you will only find out if you remove it completely, perhaps enlisting a friend to help you through any immediate withdrawal period?

 

 

 

 

 

 

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Victoria. Yes I got tested for Addison’s but passed. The first test I barely passed.

I have had adrenal issues for a while. Adrenal fatigue, but not advanced. I always had a lot of food intolerances. But gluten was fine. Histamine and salicylates where a problem though. Mast cell activation syndrome. In hindsight possibly caused by Lyme and my genetic makeup.

Then I tried psych meds and they put me on valium to counteract startup side effects. I actually had a paradoxical reaction, not side effects. And after waiting that out I could not stop valium at once. I went to a very heavy withdrawal process for a year. That is when my mast cell actvation syndrome gt way worse and I became gluten intolerant. Had hardly any foods left. And because the withdrawal of gluten was so heavy, I could not go through with it fully. I hoped it would just go away after withdrawal was over. But I still have this limited diet and am gluten intolerant 2,5 years afer withdrawal. But the withdrawal process really hurt my adrenals and my nervous system. I can’t even tolerate most supplements. I guess the valium withdrawal and damage it did is also the reason that stopping gluten gives such bad withdrawal.

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Kirsty, in my experience, being ‘gluten light’ is not helpful. I think it doesn’t make any sense tbh – it does more harm than good.

The withdrawal period is very different from being gluten-free long term. The withdrawal symptoms can be extremely unpleasant but they are temporary! Let’s say 4-6 weeks.

I personally was feeling like a drug addict or an alcoholic in rehab at the time. I was having all kinds of withdrawal issues – one of them was extreme hunger and unusual stomach cramps caused by hunger. I had to eat approx. every 2 hours – otherwise I would get very dizzy and lightheaded. It felt as if my body was finally getting the types of foods it needed (= gluten free) and wanted these ‘right’ foods constantly.  

The fact that my body viewed gluten as a drug and was addicted to it was a proof in itself for me that I am gluten intolerant. Let’s say I wouldn’t eat any potatoes for 2 or 3 weeks – nothing would happen. Often the types of food we love the most, crave and can’t live without are the very types of food we are intolerant and addicted to.

If you’re not a diabetic, the hypoglycemia could resolve completely on the gluten-free diet.  

My advice would be read about gluten withdrawal and don’t let it discourage you.

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Gluten free 01, I totally agree that gluten free light is not good.

I sometimes have to eat every hour. This seems to be related to low cortisol and low female hormones. Maybe also other deficiencies. I don’t think going gluten free is the only solution to this problem. I am sure with the help of a good doctor I will get there.

And yes, so true that the food you get bad withdrawal from is usually very bad for you.

How long did withdrawal last for you?

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43 minutes ago, Kirsty40 said:

Gluten free 01, I totally agree that gluten free light is not good.

I sometimes have to eat every hour. This seems to be related to low cortisol and low female hormones. Maybe also other deficiencies. I don’t think going gluten free is the only solution to this problem. I am sure with the help of a good doctor I will get there.

And yes, so true that the food you get bad withdrawal from is usually very bad for you.

How long did withdrawal last for you?

For me withdrawal was bad for at least 2 weeks (I was rotating between bed ridden, Mr.Hyde, and godzilla) then I recall it waxing and waning for a month or so where I would have random reaccuraces. But I was living in a house with gluten eaters.....it was nightmarish and I was very likely dealing with CC once or twice a week. -_- It was honestly worse then I wen I tried dropping amphetamine salts (aderall, ranidine) after being on them for over 15 years.

IT has been bothering me, if you claim it is related to blood sugar, would not a gluten free alternative work? A mid range bread like one from Canyon house? They tend to have decent grains and fiber to balance it. Or perhaps sucking on a hard candy every hour.  I know I suggested pumpkin seeds for fiber, protein, and hormone balance as they are great for this, but you claimed you have issues with them. Odd for a hypoallergenic food, but I am allergic to corn and used to have a allergy to olives (thank god this went away), and at one point got a intolerance to lettuce for a bit over a month so I know how random and retarded intolerance and allergies can be.
I can tell you, that like me many of your food intolerance issues might clear up in a few months on a gluten free diet if it is the culprit. You just need to find some counter measure to keep your sugar, and energy levels in check in the mean time. I do know a couple of good nutritionist who might be able to work with you and help balance your system without meds if you wish to take that route.
Wish I had more information, sometimes complete and random system issues like this can be something like salt and mineral imbalance between sodium, potassium, and magnesium and lack of minerals causing system wide distress and even related to your mast cell syndrome and adrenal fatigue. I know I read on a few occasions of this kind of thinking happening at a seminar on the health benefits of natural salts.

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