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littlepima

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littlepima Newbie
littlepima
Posted

Hi everyone. I recently went gluten-free and have been happily surprised by the results. My insurance is not so good, so I haven't been to a doctor or been tested, but I figured if the cure is to stop eating gluten, then why not just try it. For many years I have struggled with bloating, fatigue, constant illness, constipation, irritability, and (embarassingly enough) some odor. Since I have gone gluten free I have an incredible amount of energy, haven't been bloated at all, and I am actually less irritable! Unfortunately I still have to take Metamucil and Philips Colon health to be regular and I still ocassionally have some odor. I have only been gluten free for a few weeks, so I am hoping that as my body heals all of my issues will subside.

One thing that I noticed, it was a little weird, about a week after going gluten-free I noticed that my jeans were pretty loose. So I went in my closet and put on jeans I haven't been able to wear for years, they fit perfectly. I also noticed that my wedding rings are loose on my fingers. Is swelling associated with celiac disease? It happened too quickly to be considered weight loss.

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shopgirl Contributor
shopgirl
Posted

Actually, it can be weight loss. I lost 20 pounds in my first month gluten-free and I wasn't exactly killing myself at the gym since I still felt pretty lousy.

T.H. Community Regular
T.H.
Posted

One thing that I noticed, it was a little weird, about a week after going gluten-free I noticed that my jeans were pretty loose. So I went in my closet and put on jeans I haven't been able to wear for years, they fit perfectly. I also noticed that my wedding rings are loose on my fingers. Is swelling associated with celiac disease? It happened too quickly to be considered weight loss.

I tend to retain water as well as get pretty bloated around my gut, now, when I eat gluten, so it could definitely be something like that. I didn't really know I WAS bloated or retaining water, but now that I'm gluten free and it's gone? I really notice if I get gluten and it comes back. My wedding rings were loose on my fingers, too.

eatmeat4good Enthusiast
eatmeat4good
Posted

Swelling of the face, fingers and belly were the first symptoms I noticed. My rings were tighter, my jeans were tighter and my eyelids were swollen. I never knew what it was from. I was aware I was swollen but when I gained 20 pounds in two weeks I was shocked and appalled. Then it happened again a few months later. This "weight gain" was not normal for me at all as I hadn't changed my eating. I had no idea what it could be and Dr. didn't believe me when I said I normally weigh 120. It was like yeah right that's what they all say. Oh gosh I have been soooo relieved since going gluten free. This is my 4th month and I've lost 30 pounds without even trying. I am shocked. I was thinking it had to be swelling and inflammation. But I don't care what ya call it...as long as it lasts! My muscles have just started to want exercise too. Before I could hardly do anything at all without wanting to just collapse. This is so refreshing! ;)

Mari Enthusiast
Mari
Posted

I usually eat foods I prepare myself but sometimes when I eat commercially prepared food I notice an unpleasant body odor. Although the liver usually removes toxins and pollutants, some of these are removed in the body fluids by sulfur containing amino acids and are sweated out by the sweat glands. I can usually tell if I've eaten a toxin - the next day, I can smell it. Eating asparagus, artichokes, garlic which contain these sulfur amino acids helps to get out the toxins. Epsom Salts sweat baths are good, too.

SaraKat Contributor
SaraKat
Posted

I lost some weight too- mainly because I have not been eating as many processed foods since most of them contain gluten. I have been eating vegetables and fruit so much more than before.

cap6 Enthusiast
cap6
Posted

I lost 30 pounds before going gluten-free only because I was living on only rice. Since then I gained back 5 pounds but have maintained this weight for 8 months. I am sure part of the gain was because I started to eat again but have kept it off because I eat little to no processed foods. Chicken, veggies & fruit!

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      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? 
    • 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

      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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