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Suspected Symptoms Of Gluten Intolerance?


Newbie789

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Newbie789 Newbie

Hi, I am new to the forum. These are my symptoms:-

Severe bloating and sore back, Irritable bowel, Acne and Dry itchy skin, Brain fog - Memory loss, Tiredness, Nausea, Low Mood, Feeling not very sociable, Irritable, Food Cravings, Anxiety, Panic attacks, Nasal congestion, Low energy, Foot cramps, Muscle twitching, Night sweats, Ringing in ears, Rapid heartbeat, Raynaud


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MissyH Newbie

You should go get biopsies done.

(In the UK this involves eating the equivalent to 4 slices of bread a day for 6 weeks prior to the biopsies being done..then they take 4 biopsies to test)

In the US I believe they take more biopsies..and I did see on one post from a long term member on here that the length of time to eat the 'evil' foods is 3 weeks, not 6..but your doc will let you know.

I had a lot of the symptoms you have..plus, gout like feelings in my feet and low blood sugar levels (I was tested for diabetes but it wasn't that).

I didn't have blood tests as they weren't not testing blood at the time I had this all checked out in th UK but I did have biopsies..but only 3 were good to test as the nurse dropped on on the floor!

I came back negative for coeliac but was diagnosed as wheat intolerant..however I have a very sever reaction to anything liquid which contains gluten..such as lager and vinegar and I suffer if I have malt too (in most cereals even those which do not contain wheat..eg rice pops).

Because I was diagnosed I do get prescription gluten free food..so it's worth going through the tests even if they just say it is wheat intolerance.

However, I am a firm believer now in..if you cut it out and suddenly feel better..then listen to your body..so it sounds like you have wheat and lactose intolerance..but I would split up your test periods.

If I ever cheat and eat anything normal bread or pastry it can be anywhere between 1 day to 3 weeks later that it affects me..usually though it will be a week later and I suffer all of the tummy symptoms..hence I don;t cheat often!

Hope that helps a bit.

Newbie789 Newbie

Hi MissyH,

i have been on the elimination diet and tested reintroducing suspect foods which i then noticed reactions to - some fairly quickly and some delayed. It seems that i am even more sensitive to wheat and gluten since periodically removing it from my diet, and am fairly certain that wheat, gluten, barley malt etc and dairy are all a problem. I feel I know how it affects me regardless of what doctor tells me and really don't want to go through more tests just to confirm this. The only way to resolve it is a gluten free diet anyway right? I guess I need to eliminate them for longer than 1-2 weeks to see if i notice further improvements. I usually give in to my cravings after few weeks and suffer the consequences for days afterwards.

You should go get biopsies done.

(In the UK this involves eating the equivalent to 4 slices of bread a day for 6 weeks prior to the biopsies being done..then they take 4 biopsies to test)

In the US I believe they take more biopsies..and I did see on one post from a long term member on here that the length of time to eat the 'evil' foods is 3 weeks, not 6..but your doc will let you know.

I had a lot of the symptoms you have..plus, gout like feelings in my feet and low blood sugar levels (I was tested for diabetes but it wasn't that).

I didn't have blood tests as they weren't not testing blood at the time I had this all checked out in th UK but I did have biopsies..but only 3 were good to test as the nurse dropped on on the floor!

I came back negative for coeliac but was diagnosed as wheat intolerant..however I have a very sever reaction to anything liquid which contains gluten..such as lager and vinegar and I suffer if I have malt too (in most cereals even those which do not contain wheat..eg rice pops).

Because I was diagnosed I do get prescription gluten free food..so it's worth going through the tests even if they just say it is wheat intolerance.

However, I am a firm believer now in..if you cut it out and suddenly feel better..then listen to your body..so it sounds like you have wheat and lactose intolerance..but I would split up your test periods.

If I ever cheat and eat anything normal bread or pastry it can be anywhere between 1 day to 3 weeks later that it affects me..usually though it will be a week later and I suffer all of the tummy symptoms..hence I don;t cheat often!

Hope that helps a bit.

ksymonds84 Enthusiast
Hi MissyH,

i have been on the elimination diet and tested reintroducing suspect foods which i then noticed reactions to - some fairly quickly and some delayed. It seems that i am even more sensitive to wheat and gluten since periodically removing it from my diet, and am fairly certain that wheat, gluten, barley malt etc and dairy are all a problem. I feel I know how it affects me regardless of what doctor tells me and really don't want to go through more tests just to confirm this. The only way to resolve it is a gluten free diet anyway right? I guess I need to eliminate them for longer than 1-2 weeks to see if i notice further improvements. I usually give in to my cravings after few weeks and suffer the consequences for days afterwards.

I know you intended this reply to Missy but wanted to add that you sound like me. I had a negative blood test but the gp didn't do the full panel and I was already gluten light when he did the test. He offered to send me off for biopsy but I just couldn't put myself through it to add back in gluten (I was 3 months gluten free when he offered to do this). He agreed and was amazed at my results. I had alot of gi symptoms plus mouth sores, cramping legs, eczema and it all cleared up as long as I am gluten free. He went ahead and diagnosed me based on my diet response alone. I feel that you should always listen to what your body is telling you. I kept a food journal for 6 months and that helped a great deal when I had mishaps and it helped point me to where I made a mistake. Good luck and keep us informed on how you are doing!

MissyH Newbie

The only reason for getting tests is to get prescrption foods..I had to do the tests to get that.

ut absolutely..if you are ok without prescrption foods (in the UK they are so expensive to buy) then just go for it and do what your body likes.

I give in to cravings too..currently suffering from a slice of garlic bread last Sunday...grrr! :lol: My own fault! :rolleyes:

Newbie789 Newbie

Well, i am now on day 4 gluten and dairy free since my last pig out on glutening foods and already I have ten times more energy, feel happier, bloating is almost gone, woke up a lot earlier this morning and actually wanted to get out of bed. Night sweats, foot cramps, pins and needles, muscle twitching all gone. Ringing in ears is still there a bit but my heartbeat has calmed down also. I have also noticed i can focus more clearly on tasks through out the day and not feel as tired. I keep telling myself do not give in to your cravings anymore and i must admit they are starting to fade - i know its still early days though...................

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    • Rogol72
      @Richardo, I'm in the same boat as you! I can't handle certified gluten free oats at all. Quinoa is the worst, even when I soak it in water and then wash under the tap for 10 minutes ... I have a reaction. It must be an immune system reaction to the proteins in these gluten-free grains. 
    • trents
      We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and it could be why it it is seems to be common that those who suffer from dermatitis herpetiformis struggle to keep it under control. Perhaps there are qualities found in all cereal grains besides gluten that are contributing factors. Also, have you tried a low iodine diet to see if it helps with your dermatitis herpetiformis? Reportedly, reducing iodine helps some folks afflicted with dermatitis herpetiformis.
    • Richardo
      Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today. I simply never read anyone explain how grains could worsen dermatitis herpetiformis and I feel that information should be made much more readily available. Hey if someone tries going grain free and there's no improvement, no loss, however it drastically changed my life for the better and could at least be offered as a suggestion to sufferers from dermatitis herpetiformis. The other option is Dapsome and I wouldn't want anyone taking that chemical if there was a more natural solution. thanks again 
    • trents
      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain proteins that are more or less similar in structure to gluten in some ways but are not actually gluten. Having said that, the proteins found in these other cereal grains are similar enough to gluten to possibly cause cross reactivity in some celiacs. Cross reactivity also happens with non cereal grain foods as well that have a protein structure similar to gluten. A prime example is dairy (the protein "casein"). Another example may be soy. Other foods can also cause cross reactivity for different reasons, such as microbial transglutaminase (aka, "meat glue") used commonly in pressed meat products. Just so you'll know, Dr. Osborne's claims have not received wide acceptance in the celiac community and are looked upon with skepticism by the medical and scientific community. Although he is a board certified nutritionist, his doctorates are actually in chiropractic medicine and pastoral science: https://www.drpeterosborne.com/about/dr-peter-osborne/ I am not sure Osborne has the training and background to address the chemical structure that defines gluten. I would encourage you to do some research on what gluten actually is. I have done this for myself and came away convinced that only wheat, barely and rye actually contain the protein gluten. I do not doubt your claims that you have breakouts of dermatitis herpetiformis from consuming these other grains. I am just contending it is not actually from gluten.
    • Richardo
      I was diagnosed celiac about 15 years ago and followed the usual diet restriction on Wheat, barley and rye and did very well on those restrictions with no problems with dermatitis herpetiformis. 4 years ago I started getting bad rashes on my knees and calves, buttocks, around my waist and my elbows and forearms and hands. It seemed to last about 11/2 to 2 months then clear up for a month and come back  again. I never changed anything in my diet and a dermatologist told me I  must getting  cross contamination, which I knew I wasn't.  Finally after struggling with it all that time, I watched a video by Dr Osborne who sited a study done in England showing that ALL grains (rice, corn etc) contain gluten. I went on a totally grain free diet and have now been 100 percent free of dermatitis herpetiformis for over a year. I tried a test and ate corn flour and it started to come back so I'm off all grains again. Long story I know, but my question is, why is practically EVERY celiac site private or Govt only mentioning the BIG 3 and never mentions other grains as a possible means of contamination? I am free  from a horribly uncomfortable condition now and I know there are others who would be encouraged by this.
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