Question About Symptoms Taking The Gluten Challenge

[littleburgy]

I spoke to the doctor this morning and I will be undergoing the gluten challenge and taking a blood test in about 6 weeks from next week (I want to enjoy one more weekend of feeling great...)

 

First of all, where are some good resources on how much gluten to take daily for the challenge?

 

I'm new to understanding gluten sensitivity -- do you experience more symptoms the more gluten you eat -- and do they lessen if you take less gluten? Or is it across the boards -- you experience the same severity of symptoms no matter how much you eat?

 

Thank you for your help!

[mamaw]

being  celiac  or  gluten sensitive is  the  same  results  in the  end, both  require  a 100% gluten free  diet/lifestyle...24/7  to maintain better  health.....as far  as  how  much  gluten  does one  need  for  testing! Some  say two slices  of  bread  is  enough daily... My thought  is  if  you are going  through testing  let's  get  the  most  correct  dx's  so  I  say  eat  loads  of  gluten  foods you love &  enjoy  , this  way  there  is no if's  or  maybe's  with the  result...I  have  seen many times  where  some  did  the  two slice  a bread  a day  , only to have to  consume  more  gluten  &  test  again....When you  body  is loaded  with  gluten  the results  are  usually most  often  final....no  second  guessing... Plus  if  by  chance  you need to go  gluten-free  for life  you also  had a  chance  to  gorge yourself  one last  time..... some  us  of  didn't  get  that  chance.... so  think of it  as a win-win!!!!!  Of  course  if  you  need to be gluten-free  you may get  ill too>>>>>

[BlessedMommy]

I ate loads of gluten foods during my gluten challenge and ended up in the E.R. with severe neurological symptoms 10 days into it.

 

If I had eaten less gluten, there is more of a chance that I could have made it through the challenge. Now I will never have another chance for a DX, unless science advances. 

[MGR]

I second mamaw's advice!!! I was told to do an 8 week challenge- I was extremely ill throughout, sore tummy constantly, spinning dizzy head, blurred vision, ringing ears, joints to die for- I could bearly get out of bed every day, face full of sores, palate one enormous ulcer, you name it, I had it!!! Had I spent another week eating gluten items I would have ended up in A&E... But I really went for it- I was told to eat two slices of bread a day.. But I really had everything I knew I had to say bye bye for ever- baguettes freshly baked.... Baaagels.... Cupcakes.... Cakes, everything,,, I had something gluteny at every meal and I certainly felt it every time and the effects were cumulative I got worse and worse.

. When I went for my endoscopy I could barely stand up- they saw the damage in my intestine and I was diagnosed there and tren as having celiac diseñase and told to go gluten free ASAP!- unfortunately my blod tests we re negative - but they did only one test instead of a full panel - and my biopsies were also negative! So the other GI consultant who saw me said I was fine.... I see someone else every time I go to my GI appointment and everyone seems to have a different opinion... No one asks anything relevant like do you get any rashes? I even had to remind my GI that I actually had ulcerative colitis and 60 per cent of us are deficient in the antibody they look for.. And so on...

It looks like I wasted 8 weeks of my life and did not get much further... I am one of those who also get DH rash in addition to everything else ( but not too badly I have to add) and the last time I got severely glutened I took a photo of it to show my next GI... I am not doing another challenge- I am waiting for better diagnostic methods...

Now, enough of my ramble....! My advice to you now is eat as much gluteny stuff as you can and really have all those treats you know you will never have again... Make a list of of all your symptoms and make sure you report them to your doctor-Take photos of any rashes that come up - find out if anybody in your family has problems as Celiac tends to run in families and in general I wish you GOOD LUCK! You are going to feel like s........

Ley us know if you need any help hugs, etc

[nvsmom]

Most sources will recommend 1/2 up to 4 slices of bread per day (or the equivalent) but most sources say about 1-2 slices.

 

Your 6 week gluten challenge is on the short side, most sources recommend 8-12 weeks, so you may want to err on the side of eating a diet that is as gluten heavy as you can - 2 or even more slices of bread per day (Or large beers, a couple cookies and a muffin).  If you can stand it, enjoy what could be your last weeks of gluten and eat from your "gluten bucket list".  Have a cinnamon bun for me.  

 

If it becomes a problem for you, some find it better to eat gluten later in the day so their work is not as affected.

 

I would hazard a guess that most celiacs feel worse with the more gluten they eat, but that is not true for all.  Some will be violently ill almost as soon as a crumb passes their lips, others never have a symptom, and others have symptoms that grow worse with the increased frequency of consumption.  It really varies.

 

Good luck with it!

[littleburgy]

I hadn't been gluten free save for almost the last 2 weeks...does this help at all? Is this one of those things where it builds up and goes down gradually?
 

I'm a gluten noob

[BlessedMommy]

If you haven't been gluten free for a long period of time, chances are probably better for a diagnosis and for your body to tolerate the gluten challenge. In my case I had been off gluten for several months before doing the gluten challenge. It pretty much sent my body into shock. 

[nvsmom]

I hadn't been gluten free save for almost the last 2 weeks...does this help at all? Is this one of those things where it builds up and goes down gradually?

 

I'm a gluten noob

 

Chances are, after only two weeks, that celiac disease tests would not be greatly affected BUT in some people that is enough time. to bring the numbers down.  A six week gluten challenge should be more than enough time to get as accurate tests as possible.  The celiac disease tests do miss people so make sure you get as many tests done as possible to increase your chances of getting accurate results.  These tests are the best:

• tTG igA and tTG IgG  (tissues transglutaminase)
• DGP IgA and DGP igG (deaminated gliadin peptides)
• EMA IgA  (endomysial antibodies)
• total serum IgA -control test
• AGA IgA and AGA IgG - older and less reliable anti-gliadin antodies tests
• (endoscopic biopsy - 6+ samples taken)

[greenbeanie]

For what it's worth, I'd point out that severity of symptoms during the gluten challenge doesn't necessarily correlate with test results at all. I'd been gluten-light for about 15 years before testing, probably having bread or pasta twice a week on average, plus tiny amounts of gluten in seasonings and whatnot most days. I wasn't specifically avoiding it, but I'd just learned over time that I felt awful whenever I ate bread or pasta. Then I was totally wheat-free for several months (suspecting a wheat allergy) but cooked with barley flour occasionally. I was only completely gluten-free for a couple weeks, then forced myself to eat one slice of bread per day for about six weeks before testing. My doctor assured me that this was "plenty".

I know that others may see the gluten challenge as a last opportunity to "enjoy gluten foods you love" and eat as much as you want, but I absolutely hated it and felt horrible. There is no gluten food that I loved. I had to lay on my office floor for hours after my one slice of bread every day - it was worse to have it at night because then I didn't sleep at all. My hair fell out in handfulls in the shower every morning. I am a thin person but gained 15 pounds in two weeks while hardly eating anything at all (because I felt so sick). I couldn't sleep more than two hours and soaked my sheets with awful-smelling sweat half a dozen times every night. During this time my daughter was diagnosed with biopsy-confirmed celiac. In other words, all evidence pointed toward celiac for me too... But my blood tests and biopsy were squarely negative!

Unless medical science advances, I too will never know whether my tests were false negatives. There's no way I'm ever going through that again! Going completely gluten free was just as life-changing for me as it was for my daughter, yet she had a textbook celiac diagnosis and I had awful symptoms (which improved immensely as soon as the gluten challenge was over) but no clear diagnosis. The point is that symptoms don't necessarily tell you anything about what the test results will be.

Good luck - I hope you get a clear answer one way or another!

[littleburgy]

Well, I have no desire to gorge myself on gluten and carbs. For me it's like alcohol. I used to love to drink, and when I was younger, I would drink a lot. Now I rarely drink at all because I hate the way alcohol makes me feel the next day and I just don't have the same tolerance anymore. When eating certain foods make me start to feel like crap, I lose the craving for them and the appeal goes away.

 

That said, I will try to enjoy certain things in moderation. Enough to include it in my diet but not so much that I will feel like crap. We will be in Spain for a week so it will be nice to not have to stress about eating gluten free then. All of this is fairly new to me.

 

I'm still not entirely sure if it's full blown celiac's but the doctor and I both agreed that we need to be sure it's not just gluten sensitivity and food intolerance. The biggest red flag for me is the possibility of DH, that's why I'm going through the testing.

 

If the tests are negative I'm not going to worry about it. Given that I'm hypothyroid I'm apparently not supposed to be eating gluten anyway so I look forward to stepping towards true wellness in about 6 weeks!

[mamaw]

I may have lost a message or two but you have been already DX'D with the skin condition DH? IF this is the case then you NEED to be gluten free for life......sorry if I missed that in previous messages....

[cyclinglady]

Is your doctor capable of taking a skin biopsy of your DH? It is very tricky and requires great skill. Many of those with celiac disease will not get a positive blood test if most of their antibodies are in their skin. This is beyond my area of expertise, (see our DH section) but from what I read, there is no way I would encourage a DH rash. I hear it is torturous! It takes much longer to heal.

Please do a little more research. Vacationing is Spain is not going to be fun if you are itching like a crazy person!

[littleburgy]

I haven't had a formal diagnosis of DH, sorry if I have not made that clear -- I've modified my previous post -- it's something that I suspect. I've had these ulcer-like sores, they're raised like warts or blisters, that fit all the descriptions of DH but I have not had it biopsied. I may get a referral and discuss my options with the nearby dermatologist as well, he's one of the top derms in the UK so I do trust him. I've had these for quite some time now, it's something I've had to live with and travel with -- and the sores heal so slowly and it's a very stubborn skin problem that acts and responds differently than my standard eczema. These sores have developed in the last 2 years or so and I haven't spoken to the dermatologist in a while about them specifically. Lately I've only been seeing the GPs and I just get told "stay moisturized blah blah blah"

 

I guess what I mean to say is that I suspect the DH as part of a number of possible celiac symptoms I have concerns about (eczema, thyroid, anemia, constipation), which is why I'm taking the first steps in getting tested.

 

Sometimes I second guess myself and I wonder if it's worth going through it but I guess I'd rather just get it over with and then I can move on. In the end, the way our body responds to what we eat gives us the ultimate answers. What I have figured out is that it's food related, that's all I know. Dr. and I agreed that if it's celiacs, I need to know. I guess a formal diagnosis would be good for the future when I have family and friends that may not understand. To be able to have concrete justification as to why I can't eat the things others do would be helpful (particularly my in-laws who try to push food on us constantly, gluten or not!) 

[cyclinglady]

I understand. Good luck with your challenge!

[squirmingitch]

60% of celiacs with dh test negative on the blood panel & also have a low rate of positives on the endoscopic biopsies. DH has to be dx'd with a biopsy of clear skin adjacent to an active lesion. AND you still have to do the gluten challenge otherwise you will have a false negative.

[littleburgy]

60% of celiacs with dh test negative on the blood panel & also have a low rate of positives on the endoscopic biopsies. DH has to be dx'd with a biopsy of clear skin adjacent to an active lesion. AND you still have to do the gluten challenge otherwise you will have a false negative.

 

 

Where did you get these statistics? If that's the case, it sounds like my challenge and upcoming blood test will just be a waste of time, then. I'd probably have to get a separate referral to the dermatologist and do a separate challenge. 

 

Everything I'm hearing about false negatives and sketchy biopsies makes me wonder if I should even bother...though I may have to get the blood test before they run other tests anyway. I will try to get in touch with the doctor to voice my concerns. Right now I just don't have a good feeling about this whole process.

[squirmingitch]

Here is the reference:

Open Original Shared Link

And here you have to scroll down to the portion on dh:

Open Original Shared Link

Here is something you could print out & take to the derm so they do the biopsy correctly b/c SO many DON'T:

Open Original Shared Link

More info:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

There is still a 40% chance you will test positive on the bloods & more if what you have is not dh. Sometimes though if the doc is an idiot, if you test neg on the blood they flat out say you don't have celiac & will not listen any further for we all know they are gods & can't possibly be wrong & despise it even worse when someone does prove them wrong. Sorry, I have an attitude. But if you print out the info. in the links I have given you & the doc will actually READ them then I would say go ahead & get the blood test. The gluten challenge is the same for either blood or dh biopsy so I wouldn't stop eating gluten unless a derm appt. is 6 months away. 

 

REALLY, if your doc who is going to do the bloods is a reasonable person then I say go ahead & do the bloods & show him the paperwork BEFOREHAND so if the bloods turn up negative then he will know not to discount the possibility of celiac out of hand.

 

ALSO & this applies to the blood work as well as the dh biopsy & the endoscopy --- if you take oral steroids or get steroid shots within 2 months prior then it will produce false negatives. On the dh biopsy, don't use topical steroids for 3 weeks prior to the dh biopsy.

[littleburgy]

Thank you for the info! Your skepticism and frustration with doctors is understandable. From personal experience of losing my mom because of a doctor's negligence -- with some exceptions, I still have a hard time trusting them in general. I'm going to continue forward because the doctor will be testing other things and is willing to look into helping me determine possible food allergies as well. There are some I already suspect I've developed an intolerance towards (dairy in particular) but if there's other certain foods I need to know about, that will help.

 

I think for the next few weeks I will use the time to get used to a new diet -- cutting way down on sugar, no more dairy or soy, and eliminating processed food in general. The only difference is that I'll add some gluten items and just take them out after testing. It's frustrating to have to go back on the gluten for a bit because I was doing so much better without it -- but I will try to use it as a time to keep learning and phase into a new way of eating.

[squirmingitch]

I am so sorry about your mom. ((((((((((littleburgy)))))))))))))))))

My best friends hubs went to the ER for abdominal pain she & he were sure was appendicitis but the doc there said there was no possible way it was appendicitis as he was too old to have appendicitis and refused to even consider the possibility. So while the doc dawdled the patients appendix burst. Thankfully he made it & did not die but he also got a terrible infection from the bursting appendix. it just makes you wonder sometimes. 

 

I'm going to re-iterate Nichole's post earlier about the bloods that should be done. Print them out & take them with you for the doc. Each one of these bloods is important to have done and none should be skipped as each has a specific purpose.

 

tTG igA and tTG IgG  (tissues transglutaminase)
DGP IgA and DGP igG (deaminated gliadin peptides)
EMA IgA  (endomysial antibodies)
total serum IgA -control test
AGA IgA and AGA IgG - older and less reliable anti-gliadin antodies tests
(endoscopic biopsy - 6+ samples taken)

 

Your problem with dairy & soy could be b/c of celiac as the tips of the villi are what gets destroyed first & that's where the enzymes for dealing with lactose in dairy are so without those we become intolerant to dairy. When the villi heal then the problem with dairy most often subsides. Many celiacs have a problem with soy -- sometimes we can work it back in later & some have problems with it for years. My hubs & I don't seem to have any problems with it anymore although we don't get much soy. 

 

I wish you the best and let us know how things turn out for you. If you have any questions or concerns in the meantime you know where to find us.