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Where Did It All Begin?

Lailalachina

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sugarlust Newbie
sugarlust
Posted

i think my gluten intolerance may have started after i had bacterial pnuemonia back in mid 2004 - after recovering from that i started having mild stomach probs, always thinking i had food poisoning or it was from drinking Bad alcohol (i used to make home brew spirits and they were pretty dogdy for a while! lol) Or thought it may have been from the high dose of antibiotics i had to take when i had pnuemonia. and then a few months later i would eat maccas for example and always be holding screams in and begging to stop at a gas station for the toilet on the way home etc and then it went from a few times a week to many times a day no food was safe had cold sweats, fevers, labour-like stomach cramps, nauesu, all the regular stuff and sometimes passing out b4 i went to the bathroom or a mixture and thinking : do i get a bucket, go to the toilet or lay down incase i pass out! lol at that stage i thought i had stomach ulcers and the doctors werent intestested in doing any tests, just told me to eat 'bland foods' and hope for the best!

i have Always had Huge sinus infections and asthma my whole life, i have had glandular fever twice (once when 14 and once again just last year!) doctors tell me u can only get it once tho showed up in blood work Strongly both times i had it tho? anyways i do think my 'celiac problems' (havent been diagnosed, bloodwork was negative, not doing any biopsys) all 'started' after i got pnuemonia, stressful time on the body not to mention the mind!

~gluten free since 25th april 2007!~

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heatherlm Newbie
heatherlm
Posted

Hello Everyone,

I am also a newbie. I was diagnosed with Celiacs on 3-19-07.

I have also looked back over years of feeling bad most of the time, lots of stomach unrest, tired, grumpy, depressed, anxious and strange pains at odd places in my body. I ended up in the hospital in November, 2005 with severe diarrhea and dehydration. I remember the reason we didn't go to the hospital sooner was because my husband and I were used to stomach upset in me. I have been called a hypocondriac, I have been called someone who needs attention...etc. by so many of my loved ones. Anyway, I had salmonilla poisoning and was in the hospital for 6 days. I had a colonoscopy that found several benign polyps. The official diagnosis was colotis by food poisoning.

Since then I have been sicker than ever and just blamed it on the colotis. I've had so many drs tell me to just take better care of myself. I finally had enough and the family dr told me there was nothing else she could do (all she had done was give me prevacid) and basically made me feel like I was crazy. She told me to go to the emergency room, if I really felt as bad as I was making it sound. I did just that and they referred me to my life saver, the gastro dr that in one visit spent 45 mins truly listening to me. He ordered an ultrasound and endoscopy and low and behold two weeks later I had a diagnosis.

I do think I've always had celiacs disease, but the colitis really intensified the symptoms. My greatest source of guilt is that my little boy has stomach issues and I had him "checked" 3 years ago (not knowing about celiacs) and since they said everything was fine I just assumed he and I were the type of people who had stomach issues, and nothing could be done. I know better now and have had both children tested, awaiting results to the blood tests.

Thank you for letting me ramble and get things off my chest, I just feel so relieved that I have a reason for all of this. Maybe I'm not crazy after all! Then again, maybe I am. :lol:

foxglove Rookie
foxglove
Posted
I had various vague symptoms until my last pregnancy brought on the major "D".

I have read articles that have shown a link between QUITTING smoking and onset of Celiac symptoms.

L.

That is interesting about the quitting smoking link. I would love to read more on that if you happen to remember where you saw those articles. I just got diagnosed and really want to quit smoking, but I'm not sure if I should wait a bit or not - I have enough to stress about right now without taking away my normal stress-reliever! But I also want to do everything I can so I can heal - especially since sometimes my pain is worse when I smoke. Are there any former smokers out there who know how quitting affected celiac symptoms? Or current who feel the link between smoking and symptoms?

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  • Posts

    • 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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