Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newbie Here, Pursuing A Diagnosis
0

9 posts in this topic

I thought I would introduce myself and tell my story so far. Im from the UK and am currently eating gluten again to be re-tested for Coeliac.

 

I first stumbled across gluten and what it was and the intolerances people had to it whilst trying to find an answer for my acne problems which I have suffered since I was about 12, I am now 31. People on acne forums and such noted an improvement in their skin went they went gluten free, the more I read the more I realised alot of symptoms affected me. I had over the past few years suffered alot of stomach aches and bloatedness and headaches were a regular occurance aswell.

 

I started experimenting with gluten-free and cut out major sources of it such as bread and pasta etc, I hadnt been doing this long when I decided to ask my GP for the blood test. I ate as much as I could a week before the test, but at the time didnt realise it should of been alot longer, the test came back negative.

I still carried on cutting out on the major sources but was never very strict with it, but still felt alot better.

In the mean time I was finally getting properly tested for my hypoglycemic problems I had suffered since I can remember, the dr's could never find anything wrong with me but my blood sugar dropped very low one day and they referred me to an endrocrinologist. I thought maybe this could also be a possible cause of my skin issues, as thats also connected to insulin rises and such, then I also discovered a link with coeliac and hypoglycemia!!

Anyway Ive had some test for the low bloods but not heard anything back yet really, but they think I have reactive hypoglycemia.

 

So Ive been mostly gluten-free for the past year and when I have had a heavy amount of gluten my symptoms seem to be alot worse now.

I know worry my children may also have it and this is another reason I want to pursue a diagnosis.

 

I have the bloodwork ordred and am on day 13. My skin has gone to pot after being good for so long..I'd actually started feeling normal, however I have also ate alot of chocolate.

 

I now know it either the gluten or sugar that causes my acne, its just trying to figure out which, but with the stomach aches and bloateness and headches Ive started getting again I think it seems more likely the gluten? I would appreciate any opinions on this? For example I ate a normal egg sandwich on wholemeal brown bread the the other day and was bloated immediately after and for the rest of the day, but I would normally eat gluten-free bread and not have a problem, but that is still made with refined flours just not wheat flour.

Maybe Im affected by both, too much sugar and gluten?

 

I will try and eat gluten for 6wks then re-test, regardless of what the result is I will still be cutting it out,so Im glad I found this forum, it feels very strange eating rubbish again.

 

Does anyone have any ideas of food with gluten I could eat that isnt highly refined or high in sugar? As with my hypoglycemia Im suppose to eat low gi, slow release carbs, which cuts out most major gluten filled products anyway doesnt it?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome to the forum Sugar!

I think you're smart to get tested again and pursue an affirmative diagnosis.  I had hypoglycemic issues for years throughout my teens and early 20s - then it got noticeably better as my diet improved.  As I was not diagnosed with Celiac until I was 42 and I was asymptomatic, I don't know if the two issues were linked.  Now that I'm gluten-free I'm also hoping that my "adult acne" (didn't hit until I was in my 20s) will go away.  In the meantime, I have found Proactive to be very effective.

 

As far as low-carb gluten-containing foods, I used to use a lot of soy sauce (low sodium variety, with wheat in it).  I make a lot of stir-fry so that I can get a lot of veggies and the soy sauce covers up the taste of some of the veggies that I would not otherwise choose to eat - but do because I know they're good for me.  Also, whole grain bread metabolizes more slowly than refined breads so they are less likely to affect your blood sugar levels.  Getting a good dose of protein with the carbs also helps.

 

 

(Edit:  forgot to mention... I got glutened for the first time since going gluten-free this past weekend.  Along with the shakes, nasea, and exhaustion, I also got an acne breakout on my lower back... which isn't where I would typically even get acne.)

0

Share this post


Link to post
Share on other sites

Hi Thanks for the reply.

I take it from your signature you have no been diagnosed long? How are you coping?

 

My skin defiantly clears up when Im eating gluten free or low amounts but that may also be because I think in general you end up cutting out most highly refined sugary things anyway like cakes, biscuits etc, I never really ate much of the commercially produced gluten free products in their place. I will try the soy sauce as I like stir frys!

 

I also noticed after being gluten-free then eating some after a while that I got a strange rash on my neck, just like a red mark that took days to go away, this happened on two occasions..never had it before...weird

 

Now that xmas is over Ive got to try and eat gluten but also keep the sugar low. Im thinking wholemeal or seeded bread and maybe crackers and cheese.

I agree protein is very important and recommended with every meal for reactive hypoclycemia.

 

I have a appointment next week with a dietician...nothing to do with gluten intolerance but to do with my blood sugar, they want me to eat a diabetics diet basically and I have to be tested annually for diabetes. Im hoping cutting out the gluten may sort this issues amongst others.

0

Share this post


Link to post
Share on other sites

I have been making SCD Special Carbohydrate Muffins which use nut flour rather than grain flour. You can google SCD diet to find recipes. I find they are really filling and I think the blood sugar curve is good.  Having about a TBSP of good oils (butter, coconut oil, or olive oil) with each meal.  This both helps you feel full and gives you energy over time according to my chiropractor which has nutritional training and gluten intolerance.

0

Share this post


Link to post
Share on other sites

Hi Sugar,

 

Testing again is a good idea.  Sometimes people just don't pass the tests though and yet they still have severe reactions from eating  gluten.  It turns out there are many more people with NCGI (non-celiac gluten intolerance) than there are with celiac disease.  They can have the same symptoms but there are no tests for NCGI.  the treatment is the same though, 100% avoidance of gluten for life.  99% doesn't cut it.

 

It makes sense to get the celiac testing done regardless.   Your children could be tested now too.  There is no need to wait on your diagnosis to test them right?  There is a gene test for celiac that can be done too.  Having the gene doesn't mean you will get celiac disease but it is a possibility.

0

Share this post


Link to post
Share on other sites




Hi Thanks for the reply.

I take it from your signature you have no been diagnosed long? How are you coping?

 

I was used to cooking for myself and eating healthy with minimal processed food so the day-to-day wasn't actually a big adjustment for me.  Not being able to eat at most restaurants and having to take my own food every time I go to a friend's house for dinner has been a little more difficult.  Luckily I am not the first in my family to get diagnosed so my family was already familiar with most of the issues.  My sister still insists she can fix gluten-free meals for me that are safe even though they are made in a kitchen in which she regularly bakes and has 3 kids running around putting their gluteny hands in everything... but I'm still working on that one.  :)

I've been gluten-free for 3 months and got accidentally glutened for the first time last weekend.  It felt like having food-poisoning.  Best motivation to get over any uncomfortable feelings about telling people that you can't eat their food that ever was!

 

I think once you start to feel better you'll start to realize just how yucky you used to feel and the little adjustments and lifestyle changes will really start to feel worth it and it starts to not bother you so much.

0

Share this post


Link to post
Share on other sites

Hi just thought I would give an update.

I'm 6 weeks into eating gluten and plan to be retested maybe today or this week at least. I took a home test again and it was negative, however when I looked at it again about an hr later I'm sure I could see a very very thin line, but I know your not suppose to read it after the allocated time but makes me wonder.....I'm now contemplating whether to leave it a bit longer to retest or just go for it this week??.

I also now have a confirmed diagnosis of reactive hypoglycaemia, and I'd already started really restricting the sugar but now I'm even more aware my skin has cleared up almost completely! So maybe it wasn't the gluten after all, I do still feel rubbish though, constantly tired, and I've had hypo's almost on a daily basis while eating like I am, even though I'm being careful with the sugar intake, so for example I'm having weetabix and berries for breakfast, brown bread for lunch and crackers for a snack or nuts, however yesterday I had gluten free pancakes for lunch and didn't have a usual hypo a few hrs later, I'm sure it's gluten related!!

0

Share this post


Link to post
Share on other sites

In case you are unaware, if you have hypoglycemia it is not just about the obvious sugar intake.  It is also about eating foods that turn to sugar quickly in your body.  I know if I eat cereal first thing in the morning on an empty stomach I feel like crap and get all shaky.  If I put fruit on it too I'd want to die (or least immediately go back to bed).  The cereal digests quickly and is high in carbs which turn to sugar quickly, the milk has natural sugars in it, and the berries have natural fruit sugar.  The protein in the milk is not enough to counteract all that sugar intake.

0

Share this post


Link to post
Share on other sites

Thanks yeh I am aware I need to eat low gi complex carbs, I never really took the natural sugars in milk into account though, I've read that blueberries and strawberries are best on the gi scale which is what I normally have on my breakfast.

I'm pretty good in what I eat even when eating gluten I will still Try for low gi stuff, will be seeing a dietician soon so hopefully they can help me out but not holding out much hope to be honest

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,608
    • Total Posts
      918,334
  • Topics

  • Posts

    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
    • Celiac.com: Celiac Patients Could Get Gluten-free Stipend
      Celiac disease is a sensitivity to the gluten found in wheat, barley, rye, spelt and oats that causes an autoimmune response in which the body attacks ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,707
    • Most Online
      1,763

    Newest Member
    Ree8080
    Joined