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Just Diagnosed..how Long Of Eating gluten-free Until I Feel Better?

ScarlettsMommy

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ScarlettsMommy Explorer
ScarlettsMommy
Posted

With my celiac and crohns, I went undiagnosed for 2 years and I was going to dr after dr. I finally went to Johns Hopkins and was diagnosed 2 days ago. I am starting my gluten-free lifestyle change tomorrow. I was always so sick to my stomach like i had a stomach flu or like something was rotting in my stomach. How long after eating gluten-free will I actually start to feel better? Does it happen instantly or dos it take days, weeks, months? Thanks!

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amberskids Newbie
amberskids
Posted

My son was dx recently at age 2 -- they told expect at least 90 days and to also eliminate dairy because the body does not have the proper digestive enzymes to handle the dairy --- that said, since we started going gluten-free and Dairy free last tuesday, his DH is nearly disappeared, his eczema has cleared and he has gone from 5-7 BM a day down to 3 and is mostly sleeping through the night. He still wakes and is sometimes fussy and when I feel his tummy I can feel lots of "talking" rumbling, grumbling - so I know he's not completely healed, but MAN! what a difference!

Skylark Collaborator
Skylark
Posted

It's different for everyone. My stomach felt better in a couple weeks but my gluten-caused bipolar illness took another year and a lot of nutritional supplements to resolve.

AVR1962 Collaborator
AVR1962
Posted

You should notice a difference in a few weeks. Keep the diet real clean and you will recover faster. Since your symptoms have been on-going for quite some time there will probably be a length of time for repair to your system.

BabsV Enthusiast
BabsV
Posted

When I was diagnosed the doctor told me a minimum of 3 months gluten-free to start to see some sort of improvement...and that it could be 6-12 months for real improvement. I am 3.5 months in and things are definitely better (less pain, less brain fog, insomnia improving, less aching joints) but I'm far from 100%. Also, it hasn't been a steady improvement -- at the beginning I'd have a good day and then go back to feeling awful, I felt like I was all over the place and wondering if I was glutening myself without realizing it. Keeping a food diary really helped in terms of pinpointing things that were just too tough on my system (some of which I've just started reintroducing to my diet.) Also probiotics have been a HUGE help. Good luck. And be patient. Which coming from me is funny because I am notorious for not being patient!

Ginger Sturm Newbie
Ginger Sturm
Posted

Hello I'm new on here and dont really know my way around yet so I'm hoping I get a reply! (:

I just found out 3 months ago that I have a high allergy to wheat. I know Celiac Disease and wheat allergies are different but does anybody know how long it takes to feel better from a wheat allergy??

I have been gluten free/wheat free for about 3 months with barely any improvement =/ feelin a little discouraged so replies would be awesome!

Thanks for listening and I hope this works!

Duhlina Apprentice
Duhlina
Posted

I am 3.5 months in and things are definitely better (less pain, less brain fog, insomnia improving, less aching joints) but I'm far from 100%. Also, it hasn't been a steady improvement -- at the beginning I'd have a good day and then go back to feeling awful, I felt like I was all over the place and wondering if I was glutening myself without realizing it.

It's been 8 weeks for me as of yesterday and the only differences I have noticed so far are that my swelling/bloating has gone down a lot, I feel a bit more alert and not as exhausted and I'm not getting the migraines anymore. My eczema is flaring up again though as is my depression. I'm hoping it's just whatever's toxicity that is still in me working its way out. Trying to remain patient, it's only been two months for me!

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Celiac Maniac Newbie
Celiac Maniac
Posted

I was symptomatic for 10 years, at least, before diagnosis.

I started feeling better within a few days. Much better in 2 weeks.

Gluten is like smacking yourself in the head with a ball peen hammer: it feels so good when you stop.

TK Kenyon

ScarlettsMommy Explorer
ScarlettsMommy
Posted
  • Author

Thank you everyone for the input! Today was my first day eating gluten-free and i didnt feel sick today. Hopefully a sign of good things to come.

quincy Contributor
quincy
Posted

Thank you everyone for the input! Today was my first day eating gluten-free and i didnt feel sick today. Hopefully a sign of good things to come.

I hope you heal faster than I have. Its taken me more than a year to settle down and I am dealing with the residual affects such as loss of bone density, reflux and a sluggish gall bladder... I am at least tolerant of dairy again after 18 mos gluten free.

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @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!
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