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Why Now ?

DVK

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DVK Apprentice
DVK
Posted

I was wondering if anyone knows why celiac disease kicks in all of a sudden. I am sure I have it and I am waiting on tests, But I am 33 and I have had some stomach problems here and there but Why now has it kicked in to full Force?

DVK

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2kids4me Contributor
2kids4me
Posted

The trigger is variable - stress - physical or emotional. Physical illness - viral, bacterial or injury. You may have had celaic for years and been asymptomatic. It is an autoimmune disease like Type one diabetes, Hashimotos, Lupus, to name a few of the 60+ immune mediated diseases.

Why did I get Type 1 diabetes at age 25 but my son dveloped it at 9 ? I will never know.

If you have celiac or gluten intolerance - it is important that you educate yourself about the diet. Some people are not diagnosed til later in life (50 or 60) after suffering years of neurologic symptoms, osteoporosis, depression, anemia etc and no one checked for celiac til after that.

I am glad you have a doctor who is testing you for it, it is easier to deal with the unknown than the uncertainty of what is making you ill.

Welcome :)

DVK Apprentice
DVK
Posted
  • Author
The trigger is variable - stress - physical or emotional. Physical illness - viral, bacterial or injury. You may have had celaic for years and been asymptomatic. It is an autoimmune disease like Type one diabetes, Hashimotos, Lupus, to name a few of the 60+ immune mediated diseases.

Why did I get Type 1 diabetes at age 25 but my son dveloped it at 9 ? I will never know.

If you have celiac or gluten intolerance - it is important that you educate yourself about the diet. Some people are not diagnosed til later in life (50 or 60) after suffering years of neurologic symptoms, osteoporosis, depression, anemia etc and no one checked for celiac til after that.

I am glad you have a doctor who is testing you for it, it is easier to deal with the unknown than the uncertainty of what is making you ill.

Welcome :)

Thank you for the information, the funny thing is after all the cat scans and ultrasounds and blood tests, it took me doing research and finding this sit to even bring it up to my Doctor,

Kaycee Collaborator
Kaycee
Posted

Same with me DVK, it took years for me to find out what was wrong with me. It was me who suggested to the Doctor what the problem might be, but before that I must add, he did not even know I had a problem, as silly me did not think my bowel habits were serious enough, and partly because I was so embarassed about it. But upon going gluten free, I now realise I had other little problems that have cured since themselves.

Even with all the cat scans, ultrasounds and blood tests you have had, they would not have been picked up coeliac as the blood tests etc for coeliac are quite specific. The closest I thing I got to finding out I had a problem was when I was told 20 years ago that I had high levels of antibodies, but the doctor thought it was because I had a rumbling appendix, but it wasn't that, and I never thought about that blood test till earlier this year.

My trigger could be a number of things, but I think it could've been when I was about 16 and my brother had been killed in a motorbike accident. It was about that time that I started having stomach problems on and off. Then when I was 30 I was in a very destructive relationship and that was what probably sealed my fate, as my symptoms were getting worse and worse, but slowly till earlier this year eating was no fun anymore and I felt I had to find out what gives.

Cathy

Marlene Contributor
Marlene
Posted

Hi DVK,

There is a thread somewhere else on this board which deals with "The Trigger". Sorry I'm not sure which section it's under. You will find a lot of interesting stories on that thread. It seems for a lot of people that illness, such as mono, was the trigger. Also, for a lot of people it was a time of extreme emotional stress. I have also read that it can be set off by abdominal surgery such as gall bladder or appendix. Although I think that could be hard to prove seeing as how gall bladder disease can be a symptom of gluten intolerance. That would make it a symptom rather than a trigger.

Marlene

KaitiUSA Enthusiast
KaitiUSA
Posted

Mine was activated due to mono but many things can trigger it to activate. Likely, you have the gene for it and something activated that gene and that's why you have it now.

imagine22 Contributor
imagine22
Posted

mine got significantly worse during pregnancy and post-partum.

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pinktulip Apprentice
pinktulip
Posted

When I went to my GI and we were talking he said that it's become more common in our area due to the living conditions. I live in New Orleans and he said since Katrina he has seen an increase in Auto Immune disorders across the spectrum.

Canadian Karen Community Regular
Canadian Karen
Posted
When I went to my GI and we were talking he said that it's become more common in our area due to the living conditions. I live in New Orleans and he said since Katrina he has seen an increase in Auto Immune disorders across the spectrum.

Now that is interesting...... I wonder if the poor living conditions, contaminated water, etc. contributed to a greater number of gastrointestinal illnesses, which served as the "trigger" to bring on the celiac....

I know my trigger was when I got food poisoning down in Jamaica......

Karen

Rachel--24 Collaborator
Rachel--24
Posted
Now that is interesting...... I wonder if the poor living conditions, contaminated water, etc. contributed to a greater number of gastrointestinal illnesses, which served as the "trigger" to bring on the celiac....

Yeah...I'm thinking bacteria and parasitic infections. <_<

darlindeb25 Collaborator
darlindeb25
Posted

Being no one knows very much about the why's and why nots of celiacs, I know mine was always there at some extent. My mother used to tell me that as a very young child she had to extra clothes for me because I would get sick while traveling. I do not have a great memory of childhood like my sister does, although I do remember her eating stones and dirt as a young child and the doctor saying it was a vitamin deficiency causing her to do it. She is also celiac. Then when I was pregnant with my 2nd son, things became much worse, stomach troubles several times a week, etc, he is 30 yrs old today, Dec. 2. When I was pregnant with my son Joe who is now 25, my sister lost her first baby--the stress of that situation kicked in my celiacs, full force. It took me another 19 yrs to finally find out what was wrong with me. I have been gluten-free now for over 5 yrs. 4 of my 5 kids are showing signs of gluten intolerance, one has been tested and told he doesn't have it, yet how many of us had false negatives? My oldest has terrible acid reflux and the doctor wants to test for ulcers, my daughter definitely is intolerant of corn, yet doesnt want to go gluten-free, she feels she would have to give up too many favorites.

maribeth Apprentice
maribeth
Posted

I know mine was triggered bu a lot of stress and the dr just said it was depression or all in my mind and would put me on pills which I didn't take for very long as they made me feel worse. I can't believe how much better I feel after going gluten-free . Wish I'd know this years ago-life certainly would have been much different for me I'm sure. Beth.

Mary Contrary Rookie
Mary Contrary
Posted

I knew years ago wheat was not my best friend, too much bread or pasta cause bad C for a few days.

But three months ago we had a major family trauma, my step-dad died of cancer, I was constantly driving my poor mother 100 miles a day to see him in the hospital where he was for one month prior to his death..that is when my constant D started up, along with major bloating and gas and I still have it, but it has been better this last week, I have cut out all gluten for two months now, no official diagnosis yet, and maybe I'll never have one but I know what it is....the bloating and gas went away almost instantly, in a few days, after getting off of gluten though.

negative blood work last month, but I am going for biopsies this coming week and from what I gather on this site a positive there is doubtfull at this point because I have been of of gluten for 2 months now, but it is worth a shot anyway...that and a colonoscopy, just for my piece of mind if nothing else. But no matter what I am off of gluten...

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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

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    • lizzie42
      Son's legs shaking

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      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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