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Your Major Indicator

WifeMamaRN2be

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WifeMamaRN2be Newbie
WifeMamaRN2be
Posted

Hi everyone : )

What was your major indicator that you might have Celiac (if there was one)? Since I have had symptoms for so long it has been in the back of my mind for a while that I could have it, but I haven't really done anything about it until now. I have had the symptoms but my major indicator was yesterday. I had pizza on Saturday night and yesteday I woke up fine. Within a couple hours, though, I felt shaky and my muscles hurt and were weak feeling. This has continued into today, but not as severe. I have not gone gluten free yet as I wanted to get tested first. Does this sound right? Could my body have had enough and wanted to tell me in a big way?

Thanks! : )

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ravenwoodglass Mentor
ravenwoodglass
Posted

Symptoms can change in intensity and presentation so one persons primary symptom may be different from another. My first indication was that I had 'poison ivy' for 12 months out of the year as a child, it was actually DH and about the same time I became very clumsy and off balance and developed learning problems. Doctors were clueless even after I developed daily D and eventually it got to the point where I was waking up nightly to be sick for 2 or 3 hours every night.

If you are going to get testing done do stay on gluten until the testing is finished and then no matter what the results give the diet a good strict try.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Hi everyone : )

What was your major indicator that you might have Celiac (if there was one)? Since I have had symptoms for so long it has been in the back of my mind for a while that I could have it, but I haven't really done anything about it until now. I have had the symptoms but my major indicator was yesterday. I had pizza on Saturday night and yesteday I woke up fine. Within a couple hours, though, I felt shaky and my muscles hurt and were weak feeling. This has continued into today, but not as severe. I have not gone gluten free yet as I wanted to get tested first. Does this sound right? Could my body have had enough and wanted to tell me in a big way?

Thanks! : )

I started to notice that after eating one of my favorite meals, tomato soup and mozzarella cheese stuffed bread sticks, that I got HORRIBLY bloated and gassy (more so than "normal" bloated and gassy). I didn't really connect the dots until my positive blood test, but looking back, that was a big sign that I couldn't eat gluten.

Skylark Collaborator
Skylark
Posted

Chronic GI trouble here. I didn't know all the other stuff like canker sores and depression would also go away.

glutentheintolerant Rookie
glutentheintolerant
Posted

Well, it took a food store owner to tell me I needed a gluten-free diet it but I guess if I had known what I know now, these would have been my major indicators;

  • Tiredness after producing stool
  • Severe depression
  • Tiredness after eating sugary foods
  • Easily agitated on an empty stomach

Twinklestars Contributor
Twinklestars
Posted

Looking back, my major indicators something wasn't right was recurrent mouth ulcers (I'd get a new one every couple of weeks), extremely painful gas pains (I would catch myself not drawing a breath because it was so painful) and the bloating that goes along with it. But hindsight is also 20/20 and I think I can also attribute my intense growing pains in my legs and recurrent nightmares as a child to Celiac (or at least gluten intolerance).

alexsami Contributor
alexsami
Posted

diarrhea and horrible stools and gas :(

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love2travel Mentor
love2travel
Posted

Nothing. I requested bloodwork as my sister was diagnosed with gluten intolerance. Boy, was I SHOCKED when I was told I have celiac! I'd always been the healthiest one in our family. However, in retrospect I do see a few things that are related such as arthritis, fibromyalgia (which I did not know I had until April) and all my miscarriages. :( And now I get dreadfully ill from dairy. :o

But no, I had zero indicators at the time.

beebs Enthusiast
beebs
Posted

Now that I look back I probably had symptoms my whole life, awful growing pains and a 'weak stomach' as a child and then when I was older around 21 I started getting this thing when I ate 'stodgy food' - which I know realise was wheat, where I would get this mucous thing happening so bad that I couldn't swallow and then all this mucous would just come pouring out of my mouth - so gross....diagnosed as allergy. I developed severe GERD and was on medication for it. And then the year before I went gluten free I suddenly started getting episodes of transient intersussecption (where the bowel telescopes on itself) that was terrifying and each time I thought I was going to dieI had it 4 times and the last time was when I had gone gluten free for 6 weeks and then ate heaps of gluten at a restaurant. I ended up so ill I ended up in hospital. And even though my mother has celiac it still never occurred to me thats what it could be until that last episode. Hindsight is great!

pricklypear1971 Community Regular
pricklypear1971
Posted

DH.

I had "lingering" thyroid symptoms - which turned out to be gluten- bit no one would have recognized it.

No one recognized the DH, either. Just figured that was the obvious choice when gluten-free helped.

WifeMamaRN2be Newbie
WifeMamaRN2be
Posted
  • Author

Nothing. I requested bloodwork as my sister was diagnosed with gluten intolerance. Boy, was I SHOCKED when I was told I have celiac! I'd always been the healthiest one in our family. However, in retrospect I do see a few things that are related such as arthritis, fibromyalgia (which I did not know I had until April) and all my miscarriages. :( And now I get dreadfully ill from dairy. :o

But no, I had zero indicators at the time.

Do you mind if I ask how your fibro was DX? And I hope you are feeling better! : )

love2travel Mentor
love2travel
Posted

Do you mind if I ask how your fibro was DX? And I hope you are feeling better! : )

Not at all! I have had severe chronic back (and a host of other body parts) pain (see my signature). So, I was finally referred to a chronic pain management specialist (18-month waiting list here in Canada) who did a bunch of testing, poking, prodding and determined that I definitely have FMS. When a total of 11/18 pressure points, when pressed, cause agonizing pain, a diagnosis is given (with other tests). Well, all my 18/18 points were excruciating. Then I told him I also have celiac disease. At that point he was even more adamant than before that there was no doubt I had FMS.

After being strictly gluten-free now for over six months there definitely has been ZERO reprieve from my FMS pain. In fact, it may be somewhat worse. I am hoping that as time goes on the FMS will dramatically improve - it must as I am in debilitating pain each and every day. Non stop. Once I was so desperate the ER doc gave me shots of something or the other just to enable me to sleep 24 hours so I could escape the dreadful pain. Of course with FMS comes nearly no sleep - it can be nearly impossible as it is so darned uncomfortable. So, when you do not sleep your muscles are not replenished and so goes the cycle. :(

I find the FMS FAR, FAR worse to deal with than celiac just because it is always there. At least with celiac you can forget about it for periods of time. But I will never stop hoping and praying that I will get better. :) I just MUST! :D

bartfull Rising Star
bartfull
Posted

Luv, I am so sorry to hear that you are in constant pain! I hope and pray it gets better for you soon! Kind of makes me feel like a crybaby for complaining about psoriasis and insomnia!

love2travel Mentor
love2travel
Posted

Luv, I am so sorry to hear that you are in constant pain! I hope and pray it gets better for you soon! Kind of makes me feel like a crybaby for complaining about psoriasis and insomnia!

Oh, thank you. It is really hard because it affects every moment of every day and every aspect of my life. I really took health for granted a few years ago. I feel double my age. :( It hurts just to put deoderant on - and just wearing clothes hurts but I sort of have no choice with that. ;)

I understand insomnia - it can make life pretty rough, too. When I hear of others suffering from insomnia my heart really goes out to them. There are nights I literally do not fall asleep and I pay severely for it. On average I sleep well once every 7-10 nights so usually I am running on very little. Did not fall asleep during sleep study, either.

We must continue to hang in there, though! :)

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      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

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      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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