krishna

Hi,

Does anyone here have intense sugar cravings? I'm on a gluten free diet for 5-6 weeks now and I feel like eating cookies, ice-cream and crazy amount of sugar/carbs.. I am in fact going to see my doctor in a week or so to discuss this. I also noticed that whenever I drink milk, I get rapid pulse (~100 beats per minute) which lasts for 30 mins. or so and then I feel sick, lazy, have stomach aches with tightness in my chest for 4-5 days. It's ok when I eat cheese though but milk really messes me up. However, the doc checked me for milk allergies and result was negative. Could I be having lactose intolerance or some other type of reaction to milk? I had Vitamin D deficiency and low Vitamin B12, so maybe there is some malabsorption related to milk going on?.

Thanks!

i dont know exactly what kind of tests you had- but keep in mind that Allergies are different from Intolerances. you may not be allergic to milk & corn- but your intestines may be intolerant and unable to digest them.

i have had palpitations off & on over the last decade- they went away when i went gluten free. but ive had a few in the past week. the day i had my "last gluten meal" (june 30, 2010)- i actually ended up on the couch with tachycardia- my heart rate went up to about 160.. i layed down with ice for a while talking myself down from vomiting.

i think gluten can absolutely cause palpitations. but also thyroid disorders can... you should your thyroid checked by the doc- as it is common to have thyroid problems with gluten intolerance

Thanks for your reply and hope you feel better! I don't really have rapid heart beats just pounding! I think my heart rate is normal but just can hear by heart beat throughout my body for sometime. From what I can make out, thyroid and low iron can cause this to happen and probably anxiety caused by foods. My doctors checked my thyroid too and everything was normal except it was a little on the normal low range. Maybe I'm just still having gluten symptoms?? Who knows!! I've been on gluten free diet for about a month or so now and have felt better but maybe I just need few more months for some of my symptoms to disappear!! gluten intolerance is so mystifying!!

Hi.. About a month ago I was diagnosed with gluten intolerance and since then have gone on a strict gluten free diet. I have some existing symptoms which have lessened to a certain extent but still there. I've noticed that after eating certain types of foods (I'm guessing dairy) I can feel my heart pounding. It's not rapid, just normal beats but I can feel it pounding and it lasts for anywhere between few minutes to an hour or so and seems to happen intermittently. I do get some anxiety too sometimes. My doctor also told me that my thyroid is on the low side and so is my ferritin (but still in normal ranges). I was wondering if low thyroid/ferritin can cause pounding heart beats and anxiety? My doctor said I don't need any supplements and he expects everything to become normal in a few months after going gluten free. Therefore, I was wondering has anyone here have had such symptoms and have got them resolved? Or are these symptoms caused by another food? I was negative for Soy, Milk, Egg and Corn allergies. The only supplement I'm taking is Vitamin D3 1,000 IU on alternate days.

Thanks!

I was wondering if anyone here is sensitive to yeast in food products? My doctor tested me for yeast and it came back negative but he still said that I could be feeling sick due to some yeast overgrowth which sets up a path for food particles to go straight into the blood stream... Does anyone know any info regarding this? or have had symptoms? I had some gluten free chips which supposedly had some yeast and I'm feeling terribly sick. Yeast was the only thing on the label which I am suspicious about.

Thanks!

Yes, you are correct. You can have low B12 from other causes( pernicious anemia) non celiac related. You are lucky to have found a doc who is knowledgable and can give you good advice. What is his name, so I can read his publications? The problem with most doctors is that they are trained to go by only "Evidence Based" practice, meaning if it is not scientifically proven or there isn't a randomized control study (the best type of research)- then it does not exist. Very frustrating for people like me.especially since that is how I was trained, but have this crazy IBS/ anxiety thing that goes away with gluten elimination.

Yeah I feel the same, I feel lucky to have found him. I have confidence in his diagnosis and he was able to give me a really good explanation of my symptoms.

His website (Dr Alex Shikhman, MD, PhD):

Open Original Shared Link

He has a good book on gluten intolerance, checkout Amazon for ratings:

Open Original Shared Link

Open Original Shared Link

I am not sure, I have been all over the Internet and consulted a fellowship trainee(md with 6 years of additional training) to answer that question for myself. She said they don't even test for gliadin ab to detect celiacs because it was not sensitive enough, meaning that asymptomatic healthy subjects also had these ab. But..... The key is to check for damage to the small bowel, which would give you a diagnoses of celiac, even if you didn't have the elev anti tissue ab......so.....the way I understand it is if you have malabsorption( meaning you are pooping out more fat than you should...which leads to vit A,D,E And K deficiencies and possibly if you are lactose intolerant from damage to the superficial villi,and/ or you have loss of water soluble vitamins and minerals(vitamin B 12 being the most easily measured and the most common)....then you most likely Have Celiac. I've read some articles saying that they are two separate entities and spoken to several GI docs who say they are one and the same. But, I do not agree with the latter. I believe that NCGI can lead to Celiac, and that you should be careful to eliminate gluten. Again, the issue being how much of an inflammatory reaction your body mounts, everyone is different. Some have so much of a reaction and keep eating gluten that eventually something turns on and activates the gene that expresses the anti self (tTg ab).

The main issue is that yes you need to eliminate ALL gluten, because you don't want that DQ 2 gene to "turn on" and start expressing ab that attack your tissues.

Does that make sense? There is ongoing research in this area and it is poorly understood, even by trained GI docs.

I hope this explanation helps. BTW, what fecal test did he do?

Also, many celiacs seem to have several food intolerances- something I did not believe at first until I got tested and found out I was also making IgA against milk proteins. And I also can't drink too much wine as I prob am sensitive to the sulfites which gives me the crampy D the next morning.

- Anita

Everyone is different, I think you're looking at text book symptoms... the panic/anxiety can take months to go away. I still have anxiety but it is not as sever as it was 2 months back.. Anxiety could be caused by thyroid functioning which gets effected by gluten or it maybe caused by food going directly into your blood stream, yeast overgrowth etc..

I am not sure, I have been all over the Internet and consulted a fellowship trainee(md with 6 years of additional training) to answer that question for myself. She said they don't even test for gliadin ab to detect celiacs because it was not sensitive enough, meaning that asymptomatic healthy subjects also had these ab. But..... The key is to check for damage to the small bowel, which would give you a diagnoses of celiac, even if you didn't have the elev anti tissue ab......so.....the way I understand it is if you have malabsorption( meaning you are pooping out more fat than you should...which leads to vit A,D,E And K deficiencies and possibly if you are lactose intolerant from damage to the superficial villi,and/ or you have loss of water soluble vitamins and minerals(vitamin B 12 being the most easily measured and the most common)....then you most likely Have Celiac. I've read some articles saying that they are two separate entities and spoken to several GI docs who say they are one and the same. But, I do not agree with the latter. I believe that NCGI can lead to Celiac, and that you should be careful to eliminate gluten. Again, the issue being how much of an inflammatory reaction your body mounts, everyone is different. Some have so much of a reaction and keep eating gluten that eventually something turns on and activates the gene that expresses the anti self (tTg ab).

The main issue is that yes you need to eliminate ALL gluten, because you don't want that DQ 2 gene to "turn on" and start expressing ab that attack your tissues.

Does that make sense? There is ongoing research in this area and it is poorly understood, even by trained GI docs.

I hope this explanation helps. BTW, what fecal test did he do?

Also, many celiacs seem to have several food intolerances- something I did not believe at first until I got tested and found out I was also making IgA against milk proteins. And I also can't drink too much wine as I prob am sensitive to the sulfites which gives me the crampy D the next morning.

- Anita

You can have B12 low even with non celiac gluten intolerance... I've checked all these with my doctor.. I trust him given his track record and publications (books/papers) on this topic..

I also would like to see which tests were done and the results. I don't understand how the doctor can tell you that they were postive for GI but negative for celiac. There are a lot of false negatives in blood testing so if those were negative it doesn't mean you are not celiac. In the end it doesn't matter which label you use for yourself as both conditions, if indeed they are seperate conditions and not different manifestations of the same one, require you to be strictly gluten free.

I myself consider them to be the same. Both cause autoimmune impact when gluten is in the system and the treatment is the same whether you call it GI or celiac.

I was also told that there are tons of people out there who are labeled "Celiacs" but are in fact only intolerant to Gluten (or non-celiac GI). So at the end of the day you really need a great doctor for an accurate diagnosis. Yeah I agree that the treatment is the same but to get a 100% accurate diagnosis, a great doctor is needed.

I also would like to see which tests were done and the results. I don't understand how the doctor can tell you that they were postive for GI but negative for celiac. There are a lot of false negatives in blood testing so if those were negative it doesn't mean you are not celiac. In the end it doesn't matter which label you use for yourself as both conditions, if indeed they are seperate conditions and not different manifestations of the same one, require you to be strictly gluten free.

I myself consider them to be the same. Both cause autoimmune impact when gluten is in the system and the treatment is the same whether you call it GI or celiac.

I didn't have elevated anti bodies for Celiac but had for gluten/wheat. I had only stopped eating for about 3 weeks when I got tested and right 2-3 days before the test I had gotten some cross contamination and consumed some gluten.

Conceptually they may be the same thing but fundamentally they are different. Celiac is the extreme form of gluten intolerance.

Here is some info:

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Well my doctor is an expert in this field, has written books and published papers on gluten intolerance and he did a bunch of tests on me (blood, stool, saliva etc) and he confirmed that I am a non-celiac gluten intolerant. It is hard for me to trust anyone but him because of his expertise.

His name is Alexander Shikhman, MD, PhD, this is one of his books:

Open Original Shared Link

Open Original Shared Link

(If the link doesn't get displayed, the name of the book is "Gluten Nation" and is available on Amazon)

so what was your "elevated Iga" ?? was that your Anti-gliadin???

i definitely believe that you can be gluten sensitive or gluten intolerant... but your DQ2 + your symptoms just makes me too suspicious.

Regardless of whatever i think- you feel better gluten free- and if you're not like me in feeling like you need a diagnosis to get motivated- then that's great- you should just remain gluten free.. i have no doubt that it's the right thing for u

Thanks for your response, I will get a copy of my result and post them soon!

I'm not an expert on the tests, but I have never heard anything like this before in all the posts I have read here. I'm really curious what his basis is for labeling you gluten intolerant versus celiac. You really should get a copy of your test results to read for yourself. Regardless of the label, however, the same strict gluten free diet needs to be observed to stay healthy. Welcome to the gluten free world!

Yes there is a difference between gluten intolerance vs Celiac..

Here is another post that talks about this topic:

And I've posted some links above too!

Thanks!

Krishna- you COULD have Celiac. your Rheumatologist may not feel he can diagnose you without the Small Intestine Biopsies- but that doesnt mean that you do not have Celiac. your DQ2 is a Celiac specific gene which means its certainly possible that u may be positive for the disease as well. im confused that he would specifically label u NONCeliac Gluten Intolerant when your blood tests were positive & you've responded to the diet.

and maybe the other poster didnt mean what they said on a "technical" level... but just in a philosophical kind of way- because i think i understand what they meant- because it is my feeling that YES- Celiac is a specific Autoimmune Disorder in the Small Intestine to Gluten... HOWEVER.. gluten can also cause Crohns, or Hashimotos Thyroiditis, or Barret's Esophagus, or Ulcers.. there's also been studies that show that people with RA, Ms, & Autism test positive for gluten antibodies more than the general population.. studies also suggest it can trigger Lupus, or cause Neurological Disorders... i guess i just understand that you dont have to have Celiac to be in need of a Gluten free life.

Thanks for your reply. My doctor says all my blood, saliva and stool tests came back negative for Celiac but positive for gluten intolerance. He tested me for EMA, TTG etc and all are negative (through saliva/blood both).. He's also a renowned gluten intolerance specialist and has written books and published papers so its hard not to trust him but he thinks I don't need a biopsy. I don't know if I should go and get a second opinion now from a GI? But a GI will most definitely ask for a endoscopy, I'm sure! But again, I went to a very famous gluten doctor so it is hard for me to trust anyone but him when it comes to gluten intolerance!

As far as I am concerned gluten sensitivity and Celiac Disease are virtually the exact same thing. In Celiac, the small intestine becomes damaged. In gluten sensitivity, a different organ may become damaged or simply not enough damage has yet been done to the small intestine in order for you to be diagnosed Celiac.

Healing times vary per individual depending on age and severity of damage. The healing time that I keep is hearing is around two years - for me, I'm 20, I'm thinking it's going to be about 3 to get to %100. Enzymes and Glutamine can help with energy and healing.

Gluten intolerance and Celiac disease is not the same thing, fundamentally speaking. They may have the same symptoms and recovery times though. Celiac disease is an auto-immune disorder where gluten intolerance is a food intolerance that causes this auto-immune disorder. Gluten intolerance can also cause arthritis, diabetes type I, lupus etc... So you could just be gluten intolerant and not have auto-immune disorders (like Celiac etc).. Or you could have them, the most common being Celiac.

You can find more info here:

Open Original Shared Link

Open Original Shared Link

I also had and have sometimes:

-palpitations: pounding heart beats

-dizziness

Well, here are some really useful FAQs:

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Hi how's it going everyone?

I am a new member here, 29 years old male and have been diagnosed with gluten intolerance. For the last 5 months I've been really sick and have been to about 10 doctors. Finally I found someone who is a specialist in gluten (rheumatologist) and he diagnosed me by blood, saliva and stool tests (no endoscopy). According to him I am gluten intolerant and don't have Celiac (hence non-celiac). I do have the HLA-DQ2 gene as well and I did have IgA antibodies elevated even after being on a gluten free diet for about a month when I went for my test. Is there a chance I can develop Celiac in future even after being gluten free? I am trying my best to be gluten-free 100%.

Anyway, I'll share some of my symptoms:

1. Crazy panic attacks all the time after eating food, unrealistic fear

2. Abdominal distension, cramps, extreme constipation

3. Inflammation in the GI tract

4. Vitamin D deficiency and very low Vitamin B12, low thyroid numbers, low iron

5. Severe fatigue, headaches, pressure inside head and around face area

6. Chest pain, tightness around chest, throat, back and pelvic area

7. Back pain (severe) all the time

8. Weight loss - about 30 lbs in 6-7 months without even trying to loose weight

Now I'm feeling better, being gluten free for about 1.5 months, the doctors said he would like to repeat the tests after 3-4 months.. Lets see how it goes. According to him I should recover 100% as long as I avoid gluten.

How long does it take to feel 100% better? Just curios!

Thanks!