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Fell Off The Wagon And Don't Want Back On...


Cath724

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dilettantesteph Collaborator

I can totally relate. This diet is such a pain. If my symptoms weren't so severe, I would be back on gluten myself. I even think about it still, and I could hardly leave the house because of the uncontrollable D. How many people smoke? The consequences of smoking are more serious than celiac. How many people don't exercise and are overweight? How many people drink way too much alcohol, drive crazy, do drugs? You are no different than all of them. My doctor said that not many celiacs stick to the diet. I have no choice, and maybe it is better that way.


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Chrissyb Enthusiast

There is a gentleman that comes on here that has to eat through a feeding tube. So when I am struggling with this diet and want to whine I just think of him. Aleast I can still taste my food so who am I to complain, I should be thankful that I caught it in time that no real serious damage was done.

Yes there are times I would love to have a little powder sugar dounut or maybe go out to eat and just order whatever I want, but I can't and I feel better for it. I have learned how to make my own gluten free dairy free sauces which my whole family loves. My baking is improving, our dinners have been more tastey, not the same old boring meals as before.

My health is slowing improving, I have lost 50lbs and the longer I am gluten free ( 1 year now) I am sure it will get easier. I know we all need to vent and whine once in a while, but remember there are always others who are worse off then you are so be thankfull for what you do have.

  • 2 weeks later...
Yellow Rose Explorer

I live in a tiny town and I have found a couple of options. If I eat at the steak place I have the salad bar and bring my own dressing in my purse. They don't care at all. Steak and baked potatoes are great as long as I tell them to leave the Texas Toast off the plate. At the local mexican food place I can have nachos, and at the BBQ place I can have the meat and beans but not the potato salad, and at Dairy Queen I can have French Vanilla Moo Lates and hot fudge sundays with strawberries but don't add the nuts as there is some kind of coating on it. If you call your local restraunts and talk with the MGR tell them about gluten and ask if there is anything you can eat you will usually find they are eager to help and will look on the ingrediant list and read it back to you. That's how I found out all the things I could have. Ok now I want a sunday. HA!

I also found it very hard to give up gluten I don't think there is anyone who doesn't. One thing that helped me was someones discription of the poision shelf that her family keeps the gluten food on. I had not thought of it as poision but that is exactly what it is to us. If someone put poision in your food and you knew about it would you try it thinking it might not be very much in there and I will probably be ok. NO you wouldn't. Try changing the way you look at gluten and hopefully it won't be so tempting. It was the turning point for me. I have found just smelling it is now good enough for me but those girl scout cookies in front of everyplace is getting to me. Good thing they are not around for very long. :rolleyes:

I have lots of receipes for homemade sauces and dressings what are you fond of?

Yellow Rose

Fiddle-Faddle Community Regular
I think it would be incredibly hard to stick to the GFD if you are asymptomatic.

No, really, it's not!

I did two one-time gluten challenges after going gluten-free, and didn't react at all to either one.

That was 2 1/2 years ago. I have not been the least tempted to have gluten. I know too many people with lupus, fibro, RA, IBS, etc, and have seen where they end up. And there are enough good recipes out there (most on this site!) so that I don't feel deprived. I can make anything I want gluten-free whenever I want--and without those awful cravings that I used to get with gluten.

I LIKE being able to get out of bed and feel good. Why on earth would I throw that away?

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    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • 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.
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