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Gluten Anxiety

nik95670

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nik95670 Rookie
nik95670
Posted

I have been gluten free for four weeks & while the diet & diagnosis has it's challenges, I can honestly say I've never felt so good in my whole life. Increased energy, focus, mood stabilized & improved, and the god awful pain and stomach aches are GONE. I'm finding a major increase in anxiety though. I'm SO terrified that I'm just all of a sudden going to be sick again like before I went Gluten-Free. I don't know how to explain it but I feel like I SHOULD feel more confident eating, going out to social events, etc. but I think it just hasn't been long enough & I don't have the confidence. I'm still scares most days that I'm going to end up in the fetal position in pain & it prevents me from being totally happy. It almost seems too good to be true, that all I have to do is eat right & I can have such improved quality of life. After 20 years of "diagnosis" and "cures" that were short lived, I'm just feeling a lot of anxiety that this won't last. Has anyone else experienced this? How do you deal with it?

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T.H. Community Regular
T.H.
Posted

After 20 years of "diagnosis" and "cures" that were short lived, I'm just feeling a lot of anxiety that this won't last. Has anyone else experienced this? How do you deal with it?

Oh yeah, I've been there!

I first dealt with it by staying paranoid for months, LOL. Time was really the only cure for it, and for my fears that involved screwing up my good health again.

But looking back, I kind of see it as a lifestyle change rather like having a new baby. At first, you are scared to death about raising a child, screwing up, dropping the baby on its head, missing something that will hurt her, forgetting the baby in the car when you're exhausted, whatever.

But slowly, you get used to thinking of your child 24/7, and it becomes part of your daily life to listen for your kids, wonder what they're doing, think about what to say to them to keep 'em safe. The constant fear fades. But at the same time, it's not that the hyper-awareness goes away, it's just that you get used to it being a part of your normal life and the FEAR goes away.

That's pretty much what's happened to me, anyway. You won't be able to stop thinking of gluten all the time, not if you want to stay safe. But it becomes second nature after a few months.

As an example, I used to be a very oral person - I chewed on my nails all the time, popped things in my mouth to hold on to them when I was thinking(like pens and pencils), and so on. Now, the second I go out my front door, I don't do that. It took me weeks and weeks to get over that behavior, but getting sick from it was very motivating.

In other words: it'll happen. It'll become normal. Not normal for everyone else, maybe, but normal for you, so it's not so overwhelming all the time. You WILL get sick every once in a while. It's almost impossible to avoid. But you'll get over it this time, unlike all the times before in the past couple of decades.

And until it does become normal....lots of deep breaths, whatever relaxes you, lots of hugs from friends, and music, and enjoying the ever-loving heck out of your good health right now. :-)

pondy Contributor
pondy
Posted

I'm finding a major increase in anxiety though. I'm SO terrified that I'm just all of a sudden going to be sick again like before I went Gluten-Free. I don't know how to explain it but I feel like I SHOULD feel more confident eating, going out to social events, etc. but I think it just hasn't been long enough & I don't have the confidence. I'm still scares most days that I'm going to end up in the fetal position in pain & it prevents me from being totally happy. It almost seems too good to be true, that all I have to do is eat right & I can have such improved quality of life. After 20 years of "diagnosis" and "cures" that were short lived, I'm just feeling a lot of anxiety that this won't last. Has anyone else experienced this? How do you deal with it?

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    • SamAlvi
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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • 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? 
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      Son's legs shaking

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      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

      By lizzie42 · Posted

      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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