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Kelloramma

Just starting the process and would love to see if others are experiencing this

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Hello,  I am 50 and was diaganosed with IBS 30 years ago and then diverticulitis 2 years ago.  After the diverticulitis happened, then mono, my normal diarrhea changed to being constipated and having lots of mucous in my stools.  My b12 was low for 7 years and I have been taking B12  shots.  During a trip to emerg for stomach pain I was covered in a weird itchy rash on my back and the doctor thought I may have celiac and sent me for bloodwork.  Cirrhosis showed up on my liver which is bizarre because I only drink the occasional wine.  I tested positive for one of the markers for celiac (IGG) and decided to go gluten free until I get into see the GI specialist (May 1st).  I was sent for allergy testing and tested off the charts for wheat.    I have one month to wait.  I went gluten free for about 12 weeks and immediately felt better. I take buscopan when I feel an onset of symptoms.  For the most part they work pretty good.  I am having another episode and I attribute it to eating at restaurants as I have been travelling lots for my job the last few weeks.  What I dont understand is why it takes so long to feel better after I have had an "attack" (whether it is IBS or celiac).  I also get weird prickly sensations in my back and stomach and then sometimes sharp pains as I alternate between constipation and diarrhea...I am reading so much....I just get so frusrated at times...I am concerned the doctor will want me on gluten to ensure a positive test.  I have so many of the symptoms...any thoughts?

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Welcome!  

The bad news is that all celiac tests require you to be on gluten.  The blood tests measure antibodies.  If you are not injesting antibodies, then none will appear in your blood stream.  What kind of allergy testing did you have?  If IgG,  is not often readily accepted the medical community as there is dispute in the accuracy, but it can be a good tool in your bag in identifying intolerances, but this is not my area of knowledge.  

You can have a wheat allergy and have celiac disease too.  Celiac requires you to avoid gluten found in wheat, barley and rye.  It is an autoimmune reaction.  So, an exposure can mean a flare-up (like a MS or lupus flare).  You can develop symptoms for a few days, weeks or MONTHS  until the body decides to stop making antibodies.   You can also have Non-Celiac Gluten Sensitivity which can only  be determined by ruling out celiac disease.  Same symptoms, but no small intestinal damage.  

 

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Please call the GI doctors office and ask for either a call back from the doctor or to speak with a nurse.  You do need to be consuming gluten for any celiac related testing to be accurate. You need to ask their advice because of the reaction to allergy testing. They may want to see copies of that testing before you do a challenge.

Doing a challenge after being gluten free can be a bit unpleasant but it must be done. If you are not consuming gluten the antibodies will not be found and you won't get a diagnosis.

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3 minutes ago, ravenwoodglass said:

Please call the GI doctors office and ask for either a call back from the doctor or to speak with a nurse.  You do need to be consuming gluten for any celiac related testing to be accurate. You need to ask their advice because of the reaction to allergy testing. They may want to see copies of that testing before you do a challenge.

Doing a challenge after being gluten free can be a bit unpleasant but it must be done. If you are not consuming gluten the antibodies will not be found and you won't get a diagnosis.

Thank you....because it is only 4 weeks away I will wait and stay gluten free.  I read on another post that you only have to 2 weeks of eating gluten for the endoscopy to id celiac.  I travel allot with my job so I don't want to be eating gluten away from home.  I have copies of the allergy results and the liver ultrasound and the low b12 levels and the colonscopy results so I have lots of  background for the first GI visit.   I work in the medical field and I am really starting to believe that knowledge isn't always power....sometimes self diagnosis is not always the way to go....I should be working but I am fascinated by all of these posts.....Have a great day!  Kelly. 

 

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13 minutes ago, Kelloramma said:

Thank you....because it is only 4 weeks away I will wait and stay gluten free.  I read on another post that you only have to 2 weeks of eating gluten for the endoscopy to id celiac.  I travel allot with my job so I don't want to be eating gluten away from home.  I have copies of the allergy results and the liver ultrasound and the low b12 levels and the colonscopy results so I have lots of  background for the first GI visit.   I work in the medical field and I am really starting to believe that knowledge isn't always power....sometimes self diagnosis is not always the way to go....I should be working but I am fascinated by all of these posts.....Have a great day!  Kelly. 

 

Some doctors might diagnose based on response to diet along with a decrease in antibodies gluten free. It is good that you have copies of your celiac bloodwork and other testing. You might want to jot down symptoms you are getting, their intesity and duration when you are accidentally glutened. That may help with diagnosis.  If you haven't already do be sure to read the Newbie 101 thread at the top of the Coping section it has a lot of good info.

 

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I was considered IBS for over 2 decades. It was determined it is/was not. I have a list of diagnosis shingles, puppps etc that were likely missed DH. The list goes on and too much to list here.

Stay on gluten since you are someone who has a Dr willing to test you for celiac. It is very hard to be gluten-free then do the challenge. I don't recommend it. It must be done for testing at this point in time in the medical field as other posters said. My dream is they will find another way one day.

 Even if you feel it's too much symptom wise to eat a full gluten meal keep some in your system some  crackers, one piece of bread etc. My experience which I know counts for something is it is hard on the body to do the challenge after being gluten-free. 

Lastly, you are correct (no one wants to self diagnose but those who do) have had no one to help them, a dossier of files/ tests  and then have no choice. Please  don't judge too harshly not everyone is as fortunate as you to be in the medical field and have a Dr recognize , believe them, and be willing to test them. Some of us had a different path but deserve health and comfort regardless if we find it on our own until the right Dr comes along. Not our choice.

Good luck and feel well soon regardless of the results.

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    Okay, thanks. Re: MTHFR - I don't really know yet... I only started reading about it yesterday and it is pretty overwhelming. But it does seem to be common advice that if you have a close relative with it you should be tested, and I guess having 2 copies of the "C" variant, as my sister has, is the "worst" variety of it.  It came to light for her when she was going through infertility and miscarriages.  They discovered that her homocysteine was high, which led to the MTHFR testing. So that is one thing I know I would then want to proceed to do, if I do have it - get my homocysteine tested. My dad died of early-onset Alzheimer's, and apparently there is a link between high homocysteine as well as the MTHFR mutation and Alzheimer's. It also seems like it would be worth knowing if I have it since it could be the cause of my lower levels of B12. And I guess maybe I would need to start taking methyl-folate? I mean, to answer your question, I am not entirely sure what I will do if I do have it.   Probably read a lot more about it... and take supplements like methyl-folate if I really think I need to.  Check my homocysteine & control that if I need to, hopefully to lower my risk of Alzeheimer's.  It seems like a frustrating area because there appear to be limited official medical websites that really even talk much about it (so far).  I have found one article on the NIH that focuses on the link with high homocysteine. I already eat a very healthy diet.  Whole grains, lots of fruit & veg, mostly organic.  I am a vegetarian except for very rare seafood. I avoid processed food and, above all, foods with added sugar...  To me, sugar is by far the worst culprit in the SAD.  I think RA has been ruled out by my 2 negative Rheumatoid Factor tests (one done several years ago, one just this year at my physical).  Also, the way this started in my elbows, and was really only there for years, is just... weird... and definitely doesn't really fit with arthritis.  And there is no swelling to speak of, just mild pain - sometimes aching, sometimes burning, sometimes sharp...  It may or may not fit with any systemic diagnosis versus a mechanical one, but nowadays I do also have pain in my hands, feet, and knees.  So then I think, well maybe it is/was something systemic, but it was worse in my elbows for some mechanical reason but now has progressed elsewhere.  I thought Crohn's was just digestive?  (Of course, many people think that of celiac.)  So I haven't really investigated that one much. My ANA was retested and is back down to "negative," so I think that pretty much rules out lupus.  I believe fibromyalgia is still on the table. Anyhow....  Your point is nonetheless taken.  I do want to rule out celiac and go from there.  At this point I'd sure love to find out it is something I could control through my diet!
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