Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newbie Here, Pursuing A Diagnosis

SugarSpike

Recommended Posts

SugarSpike Newbie
SugarSpike
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


NoGlutenCooties Contributor
NoGlutenCooties
Posted

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.)

SugarSpike Newbie
SugarSpike
Posted
  • Author

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.

1desperateladysaved Proficient
1desperateladysaved
Posted

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.

GFinDC Veteran
GFinDC
Posted

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.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

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.

  • 5 weeks later...
SugarSpike Newbie
SugarSpike
Posted
  • Author

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


NoGlutenCooties Contributor
NoGlutenCooties
Posted

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.

SugarSpike Newbie
SugarSpike
Posted
  • Author

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body. See my blog. Click on my name to go to my page...
    2. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that...
    3. RMJ
      - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g...
    4. knitty kitty
      - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley., Welcome to the forum, but don't do it! Don't continue to eat gluten! The health problems that will come if you continue to eat gluten are not worth it. Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually. There's many of us oldsters on the forum who wish they'd been diagnosed...
    5. knitty kitty
      - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

      @tiffanygosci, Hello. I apologize for your thread being hijacked. I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain. My cycle returned early after I had my...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,980
    • Most Online (within 30 mins)
      7,748
    Cathal Brugha
    Newest Member
    Cathal Brugha
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      Outgrow celiac?

      By RMJ · Posted

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      Outgrow celiac?

      By knitty kitty · Posted

      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.