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

Do Those With Only Gluten Sensitivity Have To Stop All Gluten ?


medicalenigma

Recommended Posts

medicalenigma Newbie

Hi everyone. i have not been formally diagnosed with gluten intolerance however since i have an autoimmune disease my dr strongly wants me to consider going totally gluten free. I have tested negative 5 times on standard blood work and on an intestinal biopsy. Over the past month I have been doing mostly a paleo alkaline diet and i have significantly reduced the gluten in my diet however I have had no improvement at all...in fact i have recently gotten worse from detox symptoms.

My question is..i see alot of people here with either celiac or gluten free intolerance who are sensntive to even the smallest amounts of gluten...as i said, i have had no improvement SIGNIFICANTLY reducing the gluten in my diet...i am wondering if those with gluten intolerance verus full blown celiac have to still remove all gluten from their diet. I am praying not because of the cost of gluten free products...i have no energy to cook from scratch or even to cook at all and cannot afford gluten free products so sometimes i just have to eat something that my have gluten as opposed to not eating at all (i generally don;t do prepared or process foods but i do have healthy micro meals on hand when i need smoething quick but cannot afford to buy everything gluten free. While there are alot of yummy recipes on this site and others, i am bedridden as we speak and do not have the energy to cook them for myself.

Thanks for any advise you can give me


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

I am a celiac and I've been gluten free for one month and I have found the withdrawl gave me an overall feeling of poor health. I have less energy than normal; it's coming back now but there was a good 10 days when blinking seemed like a big effort. I have also been very cranky and off... I'm normally quite a cheerful person but I'm snappy. And the headache... ugh, that lasted about 3 weeks.

About the only thing that improved was my immediate stomach aches after eating, I still get bloating (not as extreme), the headaches are on and off, still have joint and back pain, and C is still around.

All that has improved is the stomach ache, I attribute my lack of improvement to a damaged gut. It took me years to get here so I'll need months and months to heal.

For someone who is gluten intolerant (as I understand it) they will have improved symptoms rapidly as soon as the gluten is out of their system since they don't have the damage to make it linger.

Also, celiacs need to completely remove gluten from their diets since crumbs cause that lingering damage. You can't just significantly reduce it. That might be okay for gluten intolerance since it won't cause damage, but it won't help you feel any better either.

Either way, the solution is gluten-free diet... in spite of the cost and hassle. Hugs. :(

I cook big batches of food at a time so I always have left overs to pop in the microwave. You might want to try that. Instead of 1 chicken breast for dinner, I'll cook 2 extra. When I make rice, I make enough for 2 to 3 days. When I cook eggs, I don't just fry up one egg, I cut up some veggies, perhaps add leftover rice, salmon or chicken and then pour almost a dozen eggs over top to make a fritatta. Eggs are great leftovers with some salsa. And chilli? Who can make a small batch of chilli? :)

The first while will be harder but if you start to feel better, I imagine your energy could come up and make it easier to cook those bigger batches when you have time. Hang in there. I hope you are feeling better.

Roda Rising Star

My oldest boy has been blood tested five times and each time negative. He had an EGD with a negative biopsy too.

Here are the symptoms he had before gluten free: constipation since birth, got sick a lot, stomach aches/bloating, nausea, always small/low weight for age but was consistent on his growth curve until age 9 when he dropped and quit growing.

Even though he is non celiac gluten intolerent, with myself and his younger brother being celiac, I said it was all or nothing. I wanted every bit of gluten out of his diet to have a true gluten free trial.

We have seen big improvements. Pretty much all his symptoms are gone/resolved and he has started growing and gaining weight. Within the first months gluten free he gained 6 pounds alone. I think if I had just went gluten light with him we wouldn't have gotten an accurate result, good, bad or otherwise. It's been 11 months for him now. The last time all three of us got glutened(at a restaurant we all ate the same thing) my non celiac gluten intolerent son had the worst symptoms.

So even though a person didn't test positive on the tests/biopsy and have an autoimmune reaction, doesn't mean gluten in small quantities is good for someone who is gluten sensitive. It can make you down right just as miserable as if you were celiac.

You mention you have other health conditions and that your doctor recommended you go gluten free. How will you honestly know if you feel better or not if you are still consuming some gluten? Give it a whirl. It took time for your body to get sick and unwell so it can take months to start feeling better.

KMMO320 Contributor

I am Non Celiac Gluten Intolerant and I dont react like a Celiac does with a minute amount of gluten, but a few small bites will start to make me sick, if I finish a gluteny meal, I will be ruined for the whole day. I am thankful I am not celiac, my heart goes out to everyone who has it. But in a small part of my brain I think...but what if this intolerance is just a prelude to Celiac? ALL of my symptoms are the same as what most Celiacs experience. I think its best to cut it out completely..its hard, and I am still struggling. I did so well for 3 weeks and then just blew it. I am back to being sick every day. I have NO self control. I think..its ok, Im just going to bed soon anyway...

not good :(

ravenwoodglass Mentor

You could still be celiac even though those tests were negative. Having false negative tests repeatedly caused me many years of progressively worse problems that did finally resolve once I was diagnosed. Of course I was almost dead by then.

You do need to be strict with the diet. I know it is disheartening to think about having to cook when you are not feeling well. Been there and went back this week after a now rare glutening. There are lots of things gluten free that take little effort to cook. Baked chicken and a baked potato come to mind first as one example. I also cook in batches and freeze some for times when I don't have any energy or time. A rice cooker and crock pot are helpful for many of us and allow us to cook for more than one day if we want.

I have also found I spend less on groceries now that I am gluten free than I did before but about the only gluten free specialty food I use daily is Udi's bread.

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 pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,030
    • Most Online (within 30 mins)
      7,748

    Virgini Brewsaugh
    Newest Member
    Virgini Brewsaugh
    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
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.