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

Gluten Free......should I Be Feeling Better By Now?


kasia

Recommended Posts

kasia Rookie

Hi I'm Kate, I'm a 41 year old working mum from the UK,

I've not been diagnosed yet but should get results in my biopsy on Tuesday. I've read this board avidly for the last week (haven't got the energy to do anything else!) & decided to go gluten free. The board is great BTW - much better than my GP!

It's been 6 gluten free days now & for the first 3 days I thought it was a miracle - my symptoms (vomiting, nausea, no appetite, no energy, thirst) all went away & I felt like a new woman :D - Like when you drank way too much beer the night before & feel so bad, and then slowly you realise the hangover is going away!

However in the last 3 days I seem to be going downhill again, but with different symptoms - energy levels completely shot again, headaches, always hungry & very nauseous if I don't eat (I had to go & eat rice & bolognese at 3.00am the other night), really disturbed sleep at night, & now feeling really teary.

I have tried so hard to be gluten free, & also have cut out dairy as I had a reaction which was the same as my gluten one but not as severe after mash potato with oodles of butter & milk. I don't think I've had gluten as I have been able to eat which I cannot do after having had pasta/biscuits/pizza etc (normal gluten reaction vomiting, exhaustion, thirst & diarrhoea).

I'm so hoping I'll be diagnosed on Tuesday, & hoping it will get better. I feel like I have no life at the moment & I snap at my poor kids the whole time.

I am so sorry to be so down - thanks for letting me bend your ears.

Kate


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



Celiac.com Sponsor (A8-M):



laurelfla Enthusiast

hang in there, Kate! and welcome to the board! you are right, it is a valuable place to get information.

i'm sorry that you're feeling bad... i especially had trouble with the teariness (alternating with rage!) after going gluten-free. so i feel your pain! i would say that it's pretty early on in your gluten-freeness for symptoms to disappear (even the new ones) and your body is just in a process of adjustment. for now, here are a couple of suggestions to try if you haven't already: try to find a gluten free B12 vitamin (the ones that dissolve under your tongue are better), eat as often as you feel hungry (especially protein -- although everyone always says that and i don't feel any less hungry when i eat protein :P ), and come here to unload as often as you need to! you're not alone.

feel better soon, and good luck.

Laurel.

IrishKelly Contributor
Hi I'm Kate, I'm a 41 year old working mum from the UK,

I've not been diagnosed yet but should get results in my biopsy on Tuesday. I've read this board avidly for the last week (haven't got the energy to do anything else!) & decided to go gluten free. The board is great BTW - much better than my GP!

It's been 6 gluten free days now & for the first 3 days I thought it was a miracle - my symptoms (vomiting, nausea, no appetite, no energy, thirst) all went away & I felt like a new woman :D - Like when you drank way too much beer the night before & feel so bad, and then slowly you realise the hangover is going away!

However in the last 3 days I seem to be going downhill again, but with different symptoms - energy levels completely shot again, headaches, always hungry & very nauseous if I don't eat (I had to go & eat rice & bolognese at 3.00am the other night), really disturbed sleep at night, & now feeling really teary.

I have tried so hard to be gluten free, & also have cut out dairy as I had a reaction which was the same as my gluten one but not as severe after mash potato with oodles of butter & milk. I don't think I've had gluten as I have been able to eat which I cannot do after having had pasta/biscuits/pizza etc (normal gluten reaction vomiting, exhaustion, thirst & diarrhoea).

I'm so hoping I'll be diagnosed on Tuesday, & hoping it will get better. I feel like I have no life at the moment & I snap at my poor kids the whole time.

I am so sorry to be so down - thanks for letting me bend your ears.

Kate

HANG IN THERE!! Trust me, if you view any of my posts from four months ago when i started the diet you will see these were my same concerns, just like everyone else. I used to sometimes cry because i felt like my poor kids were being held hostage in the house with a crabby mom!!

On another note, everyone has a different amount of time before they start to see the diet working, and yes, the first few days you feel like a miracle has occured...then it starts to take time all over again. The reason is, it takes your body not only days, but weeks to flush out all the many years of gluten in your system. After four months i became about 75% better...so hang in there :D (oh, and now i am back to being a happy mom towards my kids again :D )

Rusla Enthusiast

Hi Kate,

Well by gluten-free that means everything including hair, makeup, hand cream etc. Think about how many years of gluten you have in your system. Some people feel better in some ways within the first week and some in a few months or a year or so. Each person is different therefore it depends on how fast your system dumps the gluten and how much you are ingesting through hidden means.

kbtoyssni Contributor

Welcome! A lot of people have an initial few days of feeling great because they've greatly reduced the amount of gluten in their diet, but it's nealy impossible to have found all the sources of gluten in your life in a few days. I'd be willing to bet there's some gluten sneaking in somewhere. Here are some ideas of places gluten could be sneaking in:

-Have you scrubed your kitchen down?

-Have you replaced wooden spoons and scratched pans and your toaster?

-Have you replaced old condiments like mayo and butter that may be contaminated. ?

-Have you checked if your pet's food has gluten?

-Have you replaced lipsticks/chapsticks because they may be contaminated?

-Have you checked your personal care products for gluten?

-Have you checked that all your medications are gluten-free?

-Don't lick stamps or envelopes - the glue may contain gluten.

Even if you have gotten rid of all the gluten in your life, it's likely that your intestines are still healing and you wil have days where you just don't feel well until they heal all the way. You may find that other food intolerances start showing up the longer you're gluten-free (if so, you had them before, it's just gluten was making you so sick that you didn't notice).

It will take time, but hang in there. You'll get better soon!

Corkdarrr Enthusiast

Kate, I had similar beginnings. My first week gluten-free was like some sort of beautiful dream. I had no idea how terrible I felt all the time because I didn't know it was possible to NOT feel so awful. Are there really people out there that feel 'good?!'

And then things started slowly starting back up. Apparently I have a dairy thing :o and there is SO much hidden gluten it's not even funny. Just the other day I got an email about gluten used in binding certain paper towels together...as if it's not already hard enough!

It's now been three months, and if there's anything I've learned, it's that this is a VERY long process. It takes your body a lot of time to adjust and to heal and all that stuff. And new intolerances present themselves just to make it even more confusing.

Either way, stick with it. I definately don't feel great all the time. But when I do accidentally gluten myself, the results are WAY too huge to be ignored.

good luck and welcome!

Courtney

aikiducky Apprentice

Kate, welcome on the forum! I had to reply because you sound EXACTLY like me when I first went gluten free. First I felt just wonderful for a few days, and then for a long time I was tired tired tired and always hungry.

I think what it is, is there's a autoimmune reaction going on, and when you first cut out gluten, your body is just happy that the irritant is gone... but the reaction actually takes much longer to die down, and since you're not eating gluten anymore, your body is getting stronger and can react even stronger, ironically enough. It'll get calmer again after a while.

The hunger is a sigh that finally, you can absorb nutrients from your food again, and so your body starts SHOUTING for all the nutrients it's been missing. I'd say, eat when you're hungry, but try to make everything you eat count! In other words, not too much gluten free cakes, but veg and fruit and meat and fish. :)

You can expect to get bloated from different foods for a while, too. Your insides need time to heal, and until then it can be a bit hard to digest different foods.

Whatever you do, I'd say don't let a negative test result convince you to go back on gluten, if it would turn out that way. The way you've reacted to the diet, I'm positive it would be best to stay on it. Of course I'm just someone on the internet, so take it for what it's worth. :)

Pauliina


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



Celiac.com Sponsor (A8-M):



daffadilly Apprentice

If you have done all the other things suggested plus are definitely taking a B12 everyday, I suggest eating thing like applesauce, boiling some chicken and add some cabbage & carrots to make a easy to digest soup, eat organic if you can, eat things that you know you tolerate well, baked sweet potatoes are good - just add a little brown sugar instead of butter

Also, I would definitely not be drinking anything with artificial sugar... and I would go so far as to say to cut out sodas, because I just do not think they are good for you...

take your lunch, try eating meat, veggies and fruits and nuts, with no starches, ie no potatoes, sometimes when one goes gluten-free one tends to try to replace the wheat carb with potatoes... Do this for a few days and then see if you can add in rice or a white potato, noticing how you feel. Stay attuned to your body & you will figure out what works for you.

mini meals are good, be sure to eat a protein with a fruit snack. also, you might track all the things that you eat each day to make sure that you are getting enough of the essential components, there are programs that will do that for you & Spark People on the internet have a free program that is very good for that - you can track a lot of things with it

wishing all the best

kasia Rookie

Hello everyone,

Just wanted to say a heartfelt thanks for all your great replies & good wishes - if there was a flowers smilie I'd send you all a big bouquet! :D

It's good to know that you don't feel better straight away - I do feel better but some days only marginally. However I'd not considered that the pain killers I take (backache - probably from all the lying down) contain lactose & there seems to be some kind of wheat derivative in my birth control pills.....? What?

Add to the fact that my husband loves stoneground bread & leaves his crumbs everywhere. I just cut my lemon for my beetroot soup with the knife he'd been cutting bread with. Could this cause a reaction? I hadn't even thought of the toaster!

I reckon you're right about the B12 too - I have nasty mouth ulcers & ridges on my fingernails. Of course the doctors have lost my blood count so that still hasn't come back, but will hotfoot it & get some vitamins tomorrow.

I don't want to eat gluten again..... it actually scares me that'd I'd get a worse reaction still. I was moaning to my friend (who works for the good old British NHS) that I fancied a chinese duck pancake (full of gluten I think?),& he said 'Well go ahead & have one'. Granted he's not a doctor, but is he mad.....?

Thanks again

Kate

CarlaB Enthusiast

Kate, welcome to the board!

You will have ups and downs as you heal. When your remove gluten and get some rest, at first you feel better, but you will always cycle to feeling bad again. Your body has a lot of healing to do! It will build up the energy it needs to heal, then it will use it and you will feel bad. Don't get distressed! Every time you get to a bad part in the cycle, be happy that you are that much closer to being totally healed. You probably didn't get sick all at once. Most felt good, then bad, then good again, until we felt bad more than good. Now it will reverse, until we feel good more than bad. Eventually we will forget that we ever felt bad, unless we eat gluten, of course!

Do like the others have said. Chances are good that you are not 100% gluten-free. It takes time to find and remove all the gluten.

aikiducky Apprentice
Add to the fact that my husband loves stoneground bread & leaves his crumbs everywhere. I just cut my lemon for my beetroot soup with the knife he'd been cutting bread with. Could this cause a reaction? I hadn't even thought of the toaster!
That could absolutely cause a reaction! :blink::ph34r: (The knife I mean, unless you cleaned it well between). And the toaster is a major source of cross contamination! Toasters aren't that expensive, you should get yourself your own personal gluten free one. :)

There's a learning curve with starting this diet, you'll get there! :)

Pauliina

Archived

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

  • 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 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

    2. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    3. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.