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

Kelloramma

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Kelloramma Rookie
Kelloramma
Posted

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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cyclinglady Grand Master
cyclinglady
Posted

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.  

 

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Kelloramma Rookie
Kelloramma
Posted
  • Author
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. 

 

ravenwoodglass Mentor
ravenwoodglass
Posted
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.

 

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

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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      By cristiana · Posted

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      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
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