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

Reaction To Buckwheat And Other Grains?


SGRhapsodos

Recommended Posts

dilettantesteph Collaborator

Yeah, have you seen their shipping? The last time I checked it was a lot. I may have to bite the bullet and order in the future though.

I know. I've ordered from them. If you get enough it is comparable in price to the health food store.


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



Celiac.com Sponsor (A8-M):



SGRhapsodos Rookie

uote name='IrishHeart' timestamp='1328972571' post='772631']

Just curious...how long have you been gluten-free?

Could be you are just still healing your gut and unable to digest some complex starchy carbs. It is not always about gluten and possible CC.

I know it took me a while ( 9-10 MONTHS) before I could

handle some of the more starchy carbs. My GI tract was a mess.

Lactose and complex carbs--the hardest to digest at first. Blunted villi, insufficient enzymes, etc.

My doc says some people take 2 years for gut healing. (that's probably going to be me...sigh) :rolleyes:

Just suggesting--before you start assuming some products are unsafe. :)

I've been gluten-free since august of 2011, but wasn't feeling completely well. Idk if it's that I have a sensitivity or just, like you said, it may be too much for my system to digest. I will not give up on trying the product again after a while though. Maybe my gut needs some time to heal. I will be seeing another doctor soon that can give me more guidance. Till now aboidance of all grains has been the best solution.

IrishHeart Veteran

Probably wise! One of the many things I have learned about this disease process is....everyone is different!

I can eat gluten-free oatmeal to my heart's content, but try and eat

too much corn? ah, nope! :lol:

And it does not mean we are not healing, hon---just "not there yet"

Ask your doc about it, though, just to be sure.

best wishes!

UKGail Rookie

I have also been gluten-free since end of August, and feel better if I stick to getting my carbs from starchy vegetables. However, although I have no trouble avoiding gluten, I do find it difficult to completely stay away from grains. This is sometimes due to the convenience of some grain-based foods when I am pushed for time, and sometimes because I really miss my carbs. I seem to do ok with them if I stick to eating only a couple of grain-based meals/snacks a week, so I suspect, like Irishheart says, it is a problem with digestion still. I also have trouble with too much fat, and too much sugar, which I think probably supports this idea.

IrishHeart Veteran

I also have trouble with too much fat, and too much sugar, which I think probably supports this idea.

I am like you--I like my carbs, I admit it! :lol:

I had no trouble giving up gluten (good riddance to the poison that was killing me, I say!) but rice, corn, potatoes, oats? uh,uh, no way! :)

Who doesn't like a sweet treat once and awhile?

And we need some healthy fats. A juicy steak for protein, for example (apologies to the vegans among us) because many of us were so malnourished. My muscles were deeply impacted. I need protein

and it will not come from lettuce and blueberries.

Our GI tracts are still messed up and digestion is impaired, so what's a cellac to do?

Enter, digestive enzymes. :)

Take one before a meal and you may find your digestion improved.

Between them and probiotics, I was able to eat (and keep IN) more foods and my appetite improved and eventually, I gained back some weight and some muscle. ( I had dropped 90 lbs. and lost major muscle mass)

Just a suggestion!

UKGail Rookie

Hi Irishheart. You are quite right. I had been taking digestive enzymes following a suggestion from Roda, and it helped significantly. Once the course ran out I didn't get a new one, as I was much better, and by then didn't really notice the difference in not taking them. However, things have gradually got worse again, following a few probable glutenings from CC (the symptoms are for me a bit different to the pain of poor digestion - the biggest clue being a migraine and worsening brain fog). I bought a new course last week, and have now added some probiotics too (and Bs, Calcium, Magesium, D, C and Iron, so I think I am now covering all my bases!) Anyway, the pain and gassiness have reduced again significantly, so they really do seem to help. I won't really know how much better I am until after I eat my nice juicy steak that is waiting for me at home tonight. I agree steak is a great for our recovery, but it is quite a tough food to digest. I have to steer clear when I am under the weather.

I had significant problems with inflammation too. The only way the docs measured it was via a sky high ESR, but I felt it throughout my body. Not only was my digestive system up the creek, but I could barely move because I was so stiff and sore, and was very overweight too. It is not a straight line recovery, and even though I still haven't summoned the energy to start stretching or exercising, I can sometimes feel the tension draining from my soft tissues, and they are sometimes sitting more comfortably around my frame.

I know what I should be feeling with this, as I spent a lot of money on specialist rehab using pilates a few years ago, after a car accident, and got really well after a while. I was also inadvertently eating a healthy gluten free diet too. Then, when I got sick I just couldn't understand why my pilates routine, which had previously worked so well, stopped working at all, so I stopped exercising because I was just hurting myself. I never saw until recently, that it was the gluten free diet that had probably been primarily responsible for my wellness. Unfortunately, having been pretty sick for the last couple of years, it is not such an easy road back to health. I am optimistic though that I will get there, given time and a healthy gluten free diet.

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. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

    5. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

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

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.