Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Rate this topic

Recommended Posts

I have a Gastro appointment 5/18 with a local gastro that I have been waiting to see for 3 months. My hopes are that he can do Celiac testing and get me a firm diagnosis so I know what is going on with my tummy.

I was gluten-free for about 5/6 months up until 3 weeks ago when I went back on gluten awaiting this appointment. I knew they couldn't test if I wasn't eating it. I was fairly OK for maybe 3-5 days into the challenge but have felt miserable since. The brain fog has really only kicked in the last 4 days or so and I really just can't hold a clear thought very well. I also get very bad tummy pain a while after I eat gluten - which is every day now. I had pizza last night and have been in terrible pain since - today being very bad. My symptoms have been the fog/fatigue and pain/constipation. Both of these are on the extreme side. Even though I go to bed at 10:30 and get up at 6:30/7:00 I feel exhausted. I am in a fog all day not able to remember things. And the tummy pain/indigestion is about unbearable. I already take Nexium which is not helping at all. I just feel like that pizza is sitting undigested very high up in my stomach :( It's a terrible pressure feeling - and I ate it at like 6 PM last night! Grrrr.

Would you all continue to do the challenge even if it made very sick? Just to get diagnosis? I really want to know my status so I can be sure to check my 4 year old and 11 year old if they could have a predisposition as well. I want to save them the pain I have had over the years. I would also rather it all be done through my GI doc/insurance instead of paying out of pocket for something like enterolab. Being a single mom to two - cost is an issue and my insurance is very good. If they can send it through insurance I would be much better off.

Thanks for listening!!

Share this post


Link to post
Share on other sites

3 weeks isn't nearly enough time to be back on gluten if you have been off of it for 5-6 months :(

You would need to be back on it for a minimum of 3 months to even make the tests worthwhile.

I know what hell you are going through. We all do here.

Share this post


Link to post
Share on other sites

3 weeks isn't nearly enough time to be back on gluten if you have been off of it for 5-6 months :(

You would need to be back on it for a minimum of 3 months to even make the tests worthwhile.

I know what hell you are going through. We all do here.

Minimum of 3 months?? Are you serious? I thought a good 6 - 8 weeks of daily consumption would be enough to test. This is so frustrating! I am thinking I will go gluten-free again to get out of pain/fog - and just have to see what else the doc can offer me as far as diagnosis.

Why is it that people have symptoms instantly ( I see posts on here ) if it takes 3 months for gluten to build up/do enough harm for it to show up in bloodwork? You would think that people would have delayed reactions as well if it truly takes this long to cause blood tests to be skewed by it (of course I am not a scientist...just questioning stuff again).

Share this post


Link to post
Share on other sites

Minimum of 3 months?? Are you serious? I thought a good 6 - 8 weeks of daily consumption would be enough to test. This is so frustrating! I am thinking I will go gluten-free again to get out of pain/fog - and just have to see what else the doc can offer me as far as diagnosis.

If you have been off it it for 5-6 months, then the antibodies are probably out of your system now. 3 weeks (and your appt. is coming up soon so it would be about a month, right?) wouldn't be enough time. Am I correct about your timeline here?

It would be a minimum of 2 months with the equivalent of 3 pieces of bread a day every day. Hell, isn't it?

Let me know if my perception of your time line is correct.

And in the meantime, I hope others will weigh in.

Why is it that people have symptoms instantly ( I see posts on here ) if it takes 3 months for gluten to build up/do enough harm for it to show up in bloodwork? You would think that people would have delayed reactions as well if it truly takes this long to cause blood tests to be skewed by it (of course I am not a scientist...just questioning stuff again).

That has to do with antibodies showing up in your system. Even if your symptoms are immediate. Sucks, doesn't it? I am sorry to be the bearer of bad tidings :(

~Allison

Share this post


Link to post
Share on other sites

eveyone is different

call the gastro before you make any other changes. the amt of gluten time on/off is thought to be one factor

others look at an ingestion:body weight ratio (one number i was told by a physician was that you need to eat .5grams PER KG of body weight - THAT's A LOT of GLUTEN).

the fact is, there just isn't a definitive answer for ANY of it

if your dr says keep trying to gluten yourself - keep it up and know you have support

the dr may want to do a blood test, he may want to scope you (which could be 3 more weeks post appt) or he might want to do other tests.

i got "pizza glutened" last night too - "i swear it's gluten free dough" - yeah right. it may have been wheat free, but it sure wasn't gluten-free/CF/ OR SF blink.gif

as for paying out of pocket for testing vs insurance...... if you can suck it up and get the insurance company to pay, you will be better off - esp if you get a positive diagnosis. i had to pay out of pocket... and i'm STILL paying.

and because both tests have come up negative i don't get to write off the cost diff of the foods.

no matter what, remember, you have support

Share this post


Link to post
Share on other sites

If you have been off it it for 5-6 months, then the antibodies are probably out of your system now. 3 weeks (and your appt. is coming up soon so it would be about a month, right?) wouldn't be enough time. Am I correct about your timeline here?

It would be a minimum of 2 months with the equivalent of 3 pieces of bread a day every day. Hell, isn't it?

Let me know if my perception of your time line is correct.

And in the meantime, I hope others will weigh in.

That has to do with antibodies showing up in your system. Even if your symptoms are immediate. Sucks, doesn't it? I am sorry to be the bearer of bad tidings :(

~Allison

Thanks for your input Allison. Your timeline is correct. I have been eating gluten for 3 weeks now - and appointment is on 5/18. Prior to that was gluten-free for at least 5-6 months...maybe even back to October/Novemberish of last year so it could be closer to 7 months gluten-free.

Thanks again for your explanation!

Share this post


Link to post
Share on other sites

eveyone is different

call the gastro before you make any other changes. the amt of gluten time on/off is thought to be one factor

others look at an ingestion:body weight ratio (one number i was told by a physician was that you need to eat .5grams PER KG of body weight - THAT's A LOT of GLUTEN).

the fact is, there just isn't a definitive answer for ANY of it

if your dr says keep trying to gluten yourself - keep it up and know you have support

the dr may want to do a blood test, he may want to scope you (which could be 3 more weeks post appt) or he might want to do other tests.

i got "pizza glutened" last night too - "i swear it's gluten free dough" - yeah right. it may have been wheat free, but it sure wasn't gluten-free/CF/ OR SF blink.gif

as for paying out of pocket for testing vs insurance...... if you can suck it up and get the insurance company to pay, you will be better off - esp if you get a positive diagnosis. i had to pay out of pocket... and i'm STILL paying.

and because both tests have come up negative i don't get to write off the cost diff of the foods.

no matter what, remember, you have support

Ty Skygirl!

I did call the gastro today but they cannot guide me as to what to do now since it will be my first appointment with them on 5/18.Technically they cannot advise until 5/18 :(

I only knew to go back on gluten from these posts. This site has been very helpful. I will keep it up as long as I can but it seems like as the days progress my symptoms get worse/stronger. I have less than a week until the appointment now but feel like if I can go in all glutened I may have a fighting chance of accurate diagnosis.

If it stilllll urns out that they are clueless I will just go gluten-free anyhow. Thank you for the support! I am sorry to hear the gluten-free/not really gluten-free crust got you. It is not fun dealing with the consequences of that :( Hope u feel better soon!

Share this post


Link to post
Share on other sites

Thanks for your input Allison. Your timeline is correct. I have been eating gluten for 3 weeks now - and appointment is on 5/18. Prior to that was gluten-free for at least 5-6 months...maybe even back to October/Novemberish of last year so it could be closer to 7 months gluten-free.

Well that sounds like 4 weeks is not going to be enough then.

It's best if you call the GI and tell him your situation and he can best advise you on how much and how much longer to go on.

Regardless of the answer, as the other poster wrote, remember that you have support here.

Whatever happens with your testing.

~Allison

Share this post


Link to post
Share on other sites

Why is it that people have symptoms instantly ( I see posts on here ) if it takes 3 months for gluten to build up/do enough harm for it to show up in bloodwork? You would think that people would have delayed reactions as well if it truly takes this long to cause blood tests to be skewed by it (of course I am not a scientist...just questioning stuff again).

Think about it this way.

Your digestive system is technically outside your body (it contacts only things that come in from the outside, and most things that pass through it exit directly to the outside). Things that do enter your body are tiny tiny bits of protein that pass through (mainly) the filtration system of your liver. The problem with gluten, in some people, is that it damages the gut (the immediate pain you feel) and allows the spaces between your intestinal cells to loosen. With gaps in your intestine that lead directly into your body, big bits of protein get in. Your body does not like foreign protein, and it will attack it (make antibodies). These antibodies will show up in your blood stream.

So if you have been gluten-free for a while, your intestine has healed. You have to eat gluten long enough to cause damage and open the gaps between cells again. Once these gaps have opened, you'll start leaking protein into your body. The protein will be attacked and you'll start producing antibodies again.

Share this post


Link to post
Share on other sites

Sometimes I wish I had challenged, but I self-diagnosed with a lamb-rice-pears elimination because the PA I mostly saw in student health was of no use. By the time I got to a decent doctor in student health with a clue about celiac disease, I had been gluten-free for 5 or 6 months like you. We agreed that my doing a gluten challenge on top of graduate school was a bad idea.

Good luck and hang in there. I really hope you get clear test results for you and your kids for all your trouble.

Share this post


Link to post
Share on other sites

Call your regular doctor and let them know in vivid detail what is going on. If you can get an urgent care appointment do so. Your regular doctor may be able to get your appointment moved up so you can at least consult with the GI. Your GP can order blood tests, just in case you are already showing up in them. Your GP should also know your history and should know about the improvement in your health gluten free. He may be willing to diagnose you based on your history and reaction to the challenge.

It looks like your body is clearly telling you the answer. 3 months of escalating illness is a big price to pay for a doctor telling you 'officially' don't ever eat gluten again. Only you can choose if it is worth the pain.

Share this post


Link to post
Share on other sites

Call your regular doctor and let them know in vivid detail what is going on. If you can get an urgent care appointment do so. Your regular doctor may be able to get your appointment moved up so you can at least consult with the GI. Your GP can order blood tests, just in case you are already showing up in them. Your GP should also know your history and should know about the improvement in your health gluten free. He may be willing to diagnose you based on your history and reaction to the challenge.

It looks like your body is clearly telling you the answer. 3 months of escalating illness is a big price to pay for a doctor telling you 'officially' don't ever eat gluten again. Only you can choose if it is worth the pain.

I tried to do a "multi-quote" but couldn't figure it out. Sorry - I was trying to respond to all of the helpful responses I got. The description that was given about the digestive system was very helpful in understanding how people could have an immediate reaction. Thanks!

Ravenwood I can and have gone to urgent care too many times to count. They always end up doing tummy xrays which do no good. Also, I have been to the ER at least once a month for sever tummy pain if I can't manage it at all at home (if it gets to the sharp pains). I have basically been given a prescription for Vicodin and a prescription for Vicodin and sent on my way until my Gastro appointment. Oh yeah....the GP doesn't beleive in Allergies or the Celiac really. My Allergist forwarded him the results showing allergies to about every food and the GP says do not stop eating any of them. I am told by the GP to eat a regular diet, take extra fiber, and try the Bentyl or Amitzia (sp) he prescribed for me for IBS.

The GP has given me pain meds so that I do not have to have the ER visits if the pain gets too bad before the Gastro appointment. Other than that his hands are tied and he is waiting for the Gastro. They feel they have done a full workup including a tummy ultrasound and xrays - and I had a cat scan of the tummy in the ER. My bloodwork "celiac panel" in the past was negative. They have never checked vitamin levels. I have been told my iron was "slightly low" (like one point under what the low level is), and know when I was pregnant with my son the doctor threatened IV iron if it didn't improve (but who doesn't have low iron while pregnant). Other labwork has revealed slightly elevated liver enzymes - but I was told that it was only one of two liver enzymes so they are not worried about that....whatever that means. Basically they say you have IBS....sorry....you have to deal with pain episodes and severe bloating :(

Sorry for the novel. I am really trying to not break down over all of this. I do appreciate your responses through this. The 18th can't come soon enough!

Share this post


Link to post
Share on other sites

Doctors are only too willing to ignore readings that are "a little" out of range, without taking into account that those ranges are mostly too wide anyway. One point under for iron is low!! and should be supplemented. Oh, and it's only one or two liver enzymes, not the whole bloomin' lot, so don't you worry your pretty little head about that :rolleyes: You should at least have the following checked: Vit D, B12, iron (again), folate, potassium and magnesium. If any of these are low or borderline low it is a strong indication of gluten intolerance/celiac. I know, the GP doesn't believe in these things, or food allergies, only the *B....S..* IBS diagnosis, which just tells you he thinks your bowel is unhappy, not why it is unhappy. But he doesn't seem to want to know why it's unhappy and you're unhappy if he hasn't even checked your nutrient levels. His hands are not tied, he can do these things. That's the type of screening a GP is supposed to do before referral :rolleyes:

Okay, just venting my spleen a bit here, sorry about that. Roll on the 18th, and I hope you get a good gastro :)

Share this post


Link to post
Share on other sites

sounds like you need a GP! (i know, not what you want to here, & i'm sure you already figured that out)

please note, i am NOT one for meds, but it sounds like your dr would rather be a pill pusher instead of someone interested in expanding their knowledge.

if you are stuck w/ your gp, see if instead of a pain killer if they will give you a muscle relaxer (such as Atarax - the generic [hydroxyz hcl] it's VERY inexpensive, and it is a multi use pill that at very low doses often helps me w/ the very painful muscle spasms that accompany the other negative issues.)

as i mentioned before, we all suffer differently, but maybe it will help between now and your GI appt.

good luck and we are here to support you!

Share this post


Link to post
Share on other sites

Your GP is an idiot. It sounds like you need to call the GI doc and talk to him about this gluten challenge. I didn't realize you were risking an ER visit when I offered support. That doesn't make much sense. :o

Share this post


Link to post
Share on other sites

Your GP is an idiot. It sounds like you need to call the GI doc and talk to him about this gluten challenge. I didn't realize you were risking an ER visit when I offered support. That doesn't make much sense. :o

Unfortunately you cannot gall a GI doc until you are an established patient. Until 5/18 I do not have a GI doc technically - so he would not be able to advise me on the gluten challenge. I am sure once he sees me as a patient for the first time he will advise me as to what I should try. I truly feel like my stomach has stopped digesting. I have had so much pain today - I know last nights dinner is still not digesting. Gas and pressure is so bad :(

Thanks though...

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
What did you find out about your daughter ? My son is 6 and has used the exact same sentence!! He feels like there is a bubble in his throat. He has been complaining on and off for the last year and recently it seems he complains more Ans Wants me to make a doctor appt. he had reflux bad as a baby until about 2.5 and allergies to fomula Ans my milk but since then I thought that all went away. 
  • Blog Entries

  • ×
    ×
    • Create New...