Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

To Be Tested Or Not?

Hammod

Recommended Posts

Hammod Newbie
Hammod
Posted

A few years ago I started having diarrhea after every time I ate, blood in my stools, stomache pain and bloating. I went to the Doctor and he said I needed more fiber. So I went on a Diet consisting of mainly fruit, vegetables, low fat cheese and meats. I felt a ton better. But eventually went back to eating crappy processed food and now 6 months ago I started having the diarrhea again, stomache pain, bloating, nausea, severe headaches after consuming just 1-2 beers and some times I would become really sick the next day. Fatigue and some weight loss have been present, but I

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

There is no right answer to this question. Only the answer you can find that's best for you and your family.

For kids, there are a few extra reasons to go through the testing process. Primarily, because they have to deal with food in school. Having a diagnosis makes it much easier to ENFORCE the gluten free diet at school. (From what I've read, I wouldn't say "makes it easy", just "easier".)

For adults... It really depends on if you trust your own body or not. If you trust that you know when you feel bad, and when you feel good... Then a dietary challenge is good enough. (Of course, you need to be COMPLETELY gluten free to do a diet trial, not "mostly", not "for a day or two". Two to three months of GLUTEN FREE.) If you're not that certain, and you feel that you need test results to keep you "honest" on the diet, the test. But eat plenty of gluten (equivalent to three slices of bread each day) for long enough (three months), or the testing will be worthless.

JillianLindsay Enthusiast
JillianLindsay
Posted

Well said and I agree 100%. Personally, I am big on getting tested because I was so sick for so long that I really needed an answer. For others they just need to feel better and don't care why or how! It's up to you :)

Good luck,

Jillian

There is no right answer to this question. Only the answer you can find that's best for you and your family.

For kids, there are a few extra reasons to go through the testing process. Primarily, because they have to deal with food in school. Having a diagnosis makes it much easier to ENFORCE the gluten free diet at school. (From what I've read, I wouldn't say "makes it easy", just "easier".)

For adults... It really depends on if you trust your own body or not. If you trust that you know when you feel bad, and when you feel good... Then a dietary challenge is good enough. (Of course, you need to be COMPLETELY gluten free to do a diet trial, not "mostly", not "for a day or two". Two to three months of GLUTEN FREE.) If you're not that certain, and you feel that you need test results to keep you "honest" on the diet, the test. But eat plenty of gluten (equivalent to three slices of bread each day) for long enough (three months), or the testing will be worthless.

bluebonnet Explorer
bluebonnet
Posted

i'm just getting started with learning about gluten being the possible cause to my problems and am in the process of going through testing right now. so far i have only had (an incomplete) c panel done by my skeptical doctor. my doctor frankly told me he doesn't know a lot about celiac but suggests i do a "gluten free month" based on my panel. then he wants me to go back on gluten and see what happens and then possibly an endoscopy. i'm not happy with this approach. i just ordered testing from enterolab and am expecting it at my door any day now. to me having so many symptoms for so long, i need the validation. plus i want to know if i need to have my kids tested.

i think testing gives peace of mind ... or maybe not if you don't have the right doctors ordering the right tests. ultimately the decision to test or just go gluten free is a personal one. this site has been really helpful in the short time i've known about it in helping me decide and think through how to go about all this.

best wishes whichever way you decide to go! :)

JillianLindsay Enthusiast
JillianLindsay
Posted

I agree that your DR is ill-informed! My DR sent me straight to a GI specialist when my ttg came back positive for celiac disease. I didn't have a complete blood work-up, just the ttg. Both DRs told me to continue eating gluten until after the endoscopy/biopsy was done and then I went gluten-free immediately afterward. I don't like the idea of yo-yo-ing on and off the diet, especially when you start to feel so much better as soon as you're on it!

Good luck :)

Jillian

i'm just getting started with learning about gluten being the possible cause to my problems and am in the process of going through testing right now. so far i have only had (an incomplete) c panel done by my skeptical doctor. my doctor frankly told me he doesn't know a lot about celiac but suggests i do a "gluten free month" based on my panel. then he wants me to go back on gluten and see what happens and then possibly an endoscopy. i'm not happy with this approach. i just ordered testing from enterolab and am expecting it at my door any day now. to me having so many symptoms for so long, i need the validation. plus i want to know if i need to have my kids tested.

i think testing gives peace of mind ... or maybe not if you don't have the right doctors ordering the right tests. ultimately the decision to test or just go gluten free is a personal one. this site has been really helpful in the short time i've known about it in helping me decide and think through how to go about all this.

best wishes whichever way you decide to go! :)

Hammod Newbie
Hammod
Posted
  • Author

Thanks for the replies. I really want to get tested and I think I'll start eating the yuck again and then I'll make an appt. in a couple months. Is it possible to just make your own appt with a GI or do you have to be referred to one by your doc.? Just wondering. :) Thanks.

mushroom Proficient
mushroom
Posted

Hammod, based on what I know now (self-diagnosed, gluten free for two years) I think, if you can tolerate it, you are doing the right thing. So many issues come up if you don't have a diagnosis, ones you wouldn't expect. Even down to my local Coeliac Society (New Zealand) won't let me join because I'm not diagnosed. You have the piece of paper, just like the college degree, to back you up. You may be equally able to do the job without the degree, but the piece of paper gets you the job.

As for getting in to see a GI, it depends on your insurance. An HMO will require you to have a referral; a PPO you can go where you like. Every insurance is different.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Hammod Newbie
Hammod
Posted
  • Author

Hammod, based on what I know now (self-diagnosed, gluten free for two years) I think, if you can tolerate it, you are doing the right thing. So many issues come up if you don't have a diagnosis, ones you wouldn't expect. Even down to my local Coeliac Society (New Zealand) won't let me join because I'm not diagnosed. You have the piece of paper, just like the college degree, to back you up. You may be equally able to do the job without the degree, but the piece of paper gets you the job.

As for getting in to see a GI, it depends on your insurance. An HMO will require you to have a referral; a PPO you can go where you like. Every insurance is different.

I guess I'm kind of worried that if the test results come back negative they will think I'm making the symptoms up or that I should try other things before having the tests done which is why I would rather go straigt to see a GI. I was really sick again yesterday with Diarhea like 6 times. Of course dummy me read somewhere that Hidden Valley Ranch was gluten free and I used it without looking at the label and after being sick yesterday I read the label and low and behold there is gluten it. At least there is in the buttermilk version. ugh. Its definitely going to be tough to have to constantly read the labels on things, but if that's what I gotta do then I gotta do it. :)

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Hammod, if you are in the US, then testing not only gives you NO advantages, it could also cost you dearly. If you are given an ironclad diagnosis of celiac, then insurance companies can use it as an excuse NOT to cover you or to raise your rates.

Since you already know that your symptoms are consistent with celiac AND that they improve on a mostly gluten-free diet, I don't think there is anything to be gained from further testing at this point. Besides, dietary response seems to be the most accurate kind of testing anyway. There are tons of people who, for whatever reason (lack of accuracy on tests, etc) test NEGATIVE for celiac--but either really do have celiac or have something that exactly mimics celiac. Besides, many people--with and without official diagnoses of celiac-- have reported having much, much more severe symptoms--and damage--after going BACK on a gluten diet for testing purposes.

Would there be anything to gain from actually damaging yourself?Wat about the potential of causing damage that takes months or years to reverse?

Remember, we don't ask anyone with an obvious peanut allergy to consume lots of peanuts just so that there is enough of a reaction, say, anaphylactic shock, to be SURE that there is a peanut allergy.

Now, if you go glutenfree (and probably caseinfree for a short time, as most celiacs seem to need to do so for at least a short time in order to heal properly), and you still have issues, then I think further testing WOULD be called for. And in that case, it would be likely that you wouldn't be looking for celiac any more but something else.

Hammod Newbie
Hammod
Posted
  • Author

Hammod, if you are in the US, then testing not only gives you NO advantages, it could also cost you dearly. If you are given an ironclad diagnosis of celiac, then insurance companies can use it as an excuse NOT to cover you or to raise your rates.

Since you already know that your symptoms are consistent with celiac AND that they improve on a mostly gluten-free diet, I don't think there is anything to be gained from further testing at this point. Besides, dietary response seems to be the most accurate kind of testing anyway. There are tons of people who, for whatever reason (lack of accuracy on tests, etc) test NEGATIVE for celiac--but either really do have celiac or have something that exactly mimics celiac. Besides, many people--with and without official diagnoses of celiac-- have reported having much, much more severe symptoms--and damage--after going BACK on a gluten diet for testing purposes.

Would there be anything to gain from actually damaging yourself?Wat about the potential of causing damage that takes months or years to reverse?

Remember, we don't ask anyone with an obvious peanut allergy to consume lots of peanuts just so that there is enough of a reaction, say, anaphylactic shock, to be SURE that there is a peanut allergy.

Now, if you go glutenfree (and probably caseinfree for a short time, as most celiacs seem to need to do so for at least a short time in order to heal properly), and you still have issues, then I think further testing WOULD be called for. And in that case, it would be likely that you wouldn't be looking for celiac any more but something else.

Another thing I'm thinking about is I keep hearing people talk about cross - contamination of utensils and toaster etc... I know my husband will not just take my word for it that I'm celiac and he sure wouldn't let me just go out and by myself a new toaster and wooden spoons etc... if I don't know for sure. Is cross contamination an issue for everyone who has celiac/gluten intolerance or does it depend on how sensitive you are? I sometimes feel sick even when I'm pretty sure I haven't consumed any gluten and just wonder if this is why. Not super sick, but kind of naseaus.

I also already have health insurance through work. Can they really drop you for being diagnosed with something?

pearcenalaska Newbie
pearcenalaska
Posted

Another thing I'm thinking about is I keep hearing people talk about cross - contamination of utensils and toaster etc... I know my husband will not just take my word for it that I'm celiac and he sure wouldn't let me just go out and by myself a new toaster and wooden spoons etc... if I don't know for sure. Is cross contamination an issue for everyone who has celiac/gluten intolerance or does it depend on how sensitive you are? I sometimes feel sick even when I'm pretty sure I haven't consumed any gluten and just wonder if this is why. Not super sick, but kind of naseaus.

I also already have health insurance through work. Can they really drop you for being diagnosed with something?

This is also my dilemma. I totally feel better on a gluten free diet but think I am getting contaminated or unknowingly eating hidden gluten. It gets to be so frustrating. My husband has been really great about my diet and my sons but he really would like a diagnosis. Sometimes I think he thinks I am crazy. I have been tested but am waiting for results. I have been on a gluten free/dairy free diet (aside from hidden gluten) for about 6 months so I am not expecting to test positive now. It is all so confusing! My son is 8 and he would like proof but to me the fact that his stomach doesn't hurt every night at bedtime is pretty good proof to me!

Hammod Newbie
Hammod
Posted
  • Author

This is also my dilemma. I totally feel better on a gluten free diet but think I am getting contaminated or unknowingly eating hidden gluten. It gets to be so frustrating. My husband has been really great about my diet and my sons but he really would like a diagnosis. Sometimes I think he thinks I am crazy. I have been tested but am waiting for results. I have been on a gluten free/dairy free diet (aside from hidden gluten) for about 6 months so I am not expecting to test positive now. It is all so confusing! My son is 8 and he would like proof but to me the fact that his stomach doesn't hurt every night at bedtime is pretty good proof to me!

I would also like to get tested for my 6 year old daughter who seems to take tums on a daily basis (about 3-4 times a day) because her tummy hurts after she eats. She also suffers from constipation a lot. Doctors were worried about her when she was little because it seemed she was growing on a very slow scale. She is 6, but still wears some 4/5 clothes. She's only in like the 15% for her height and weight.

ravenwoodglass Mentor
ravenwoodglass
Posted

I would also like to get tested for my 6 year old daughter who seems to take tums on a daily basis (about 3-4 times a day) because her tummy hurts after she eats. She also suffers from constipation a lot. Doctors were worried about her when she was little because it seemed she was growing on a very slow scale. She is 6, but still wears some 4/5 clothes. She's only in like the 15% for her height and weight.

IMHO no child should need to take Tums. I wouldn't hesitate to call her ped and request a blood test and evaluation for celiac. Many of us do suffer constipation, sometimes really severe for a while before we start getting D. I have always wondered if the body isn't trying to drain every last nutritent it can in the early stages but I don't know.

After you are done with testing do give her a try on the diet. It won't hurt and may make a huge difference.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748
    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.