Celiac Testing - Desperately Need Advice Please!

[ayla89]

Hi everyone.

I live in Adelaide, Australia. 

I am 27 in April this year, shortly after wedding.

I'm fairly new to gluten intolerance.

I apologize if this question has been discussed before.

Long story shorter, I'm getting married on 2nd April and we plan to start a family asap afterwards.

In April 2015 I was hospitalized with severe constipation, which lead to partial bowel obstruction. I won't gross you out with the details of my treatment...but lets just say, it wasn't at all pleasant.

A few months after treatment, i was placed on a low fodmap diet by dietitian, cutting out all gluten, lactose and numerous other things.

When I reintroduced foods into my diet, only gluten caused issues for me. So I've been strictly gluten free for approximately 3-4 months.

I'm currently close to likely being hospitalized again with possible bowel obstruction, after unknowingly eating gluten in a salad dressing at Xmas...not been a pleasant couple of weeks...healing on my own for now. Thats not my question.

My question is...I've read that to get tested for celiac disease or to rule it out to instead having non-celiac gluten intolerence, a normal gluten filled diet is needed to show damage to intestines and allow for blood tests to work properly etc.

But...eating a trace of gluten in a salad (which I ate with every meal for 3 days as it was a BIG bowl of salad) makes me contipated for 2 weeks...I don't want to imagine how sick I shall be if I were glutened for several weeks before testing...

I've also read that celiac disease can be dangerous during pregnancy if eating any gluten...

So...wedding is 2nd April so I cannot afford time to test before wedding as being sick in next 3 months makes planning wedding and getting fitter practically impossible...but we plan to start conceiving straight afterwards in May...but I don't want to risk a potential pregnancy if I end up having celiac or non-celiac etc, and undergo testing at same time...and I am sure managing a small baby whilst dealing with major glutening would be very hard as well...

At present I am basically living with a self-diagnosis and avoiding any traces of gluten or wheat...some people tell me self-diagnosing non-celiac gluten intolerance is wrong thing to do, others say that its okay so long as I feel better gluten-free, which I most certainly do.

Does anyone know of a way to test celiac disease without being on a gluten diet? Cause only option I see is testing straight after wedding and delaying pregnancy for 6 months or so til my body recovers...which I don't want to waste time waiting as my fiance is a cancer survivor, and we want to start a family asap. We see no sense in waiting.

Has anyone in Celiac community have experience with planning/being pregnant whilst testing or having celiac disease? Or experience with non-celiac gluten intolerance. 

Thank you...

[glutenfreemomma188]

Boy, this is a really hard question to answer. Being someone who has celiacs and has had it now for a good 3 years, I know how hard it can be. Initially what got me to go to the clinic was my horrible stomach pain. At that time I was eating gluten not even knowing that was what was giving me issues. I was given a blood test to see if I had any antibodies in my body that were trying to fight off the gluten. This test was called:  Tissue Transglutaminase (tTG) antibody, IgA serum. My numbers were off the charts. My doctor instead of referring me to a GI specialist, told me that I have Celiacs Disease and to go on a strict gluten free diet. I was on that for 17 months when I started to think that maybe this test could of given me a false positive. I then had to go back on gluten for 3 months before I had an endoscopy or scope down my throat and into my intestines to confirm celiacs. It was confirmed that I do have it.  So I understand how you feel. 

If you want to know 100% if you have celiacs disease, my suggestion would be to possibly look into seeing a local GI doctor and speaking with them about your issue. They would know what steps you should take that would be both safe for you and would give the best results as well. This would be my first step if I were you. The next suggestion I would have would be to wait until after the wedding. I know you mentioned that both you and your husband are very eager to start working on making a family * I do not blame you* but you need to think about you and your health first. You cannot be 100% for your baby if you are ill with stomach pain. You need to make sure you are taken care of before you look into making a family. These are only my suggestions though because ultimately it is up to you, but I would say please try those two suggestions first. 

Do keep in mind though, if you do have celiacs disease, your doctor would recommend you go on a strict gluten free diet *Exactly what you are doing now* to help you, and that is really all that is needed.  The gluten free diet for a person with celiacs helps the disease to stay inactive basically, the symptoms to either simmer down or go away completely *On occasion some new ones may appear* but usually they are of no concern, and lowers your risk of serious complications during pregnancy & throughout your life.  Honestly, you could just continue doing what you are doing *Eliminating all gluten & cross contamination* from your diet and not worry about it. It is all up to you.  If you do however choose to go this rout, please make sure and do A LOT of research about how easy it is to get cross contamination and where gluten is found. Gluten has many names too, you must realize that. If you want to get real serious, search as if you have Celiac and this will give you a great idea of how strict you need to be and where gluten can hide. It is like a ninja!!  lol.  

(Make sure if you are on the gluten free diet that you are supplementing with a good multivitamin, I personally use Garden of Life's prenatal vitamins, they are both gluten free and natural without any added chemicals, dyes, and extra fillers. They use all raw ingredients and even include a probiotic in the vitamins.)

I do not currently know of any tests that will confirm whether or not you have celiacs without you actually eating gluten. In order for the body to have a reaction to gluten and the tests to identify it, you need to be ingesting it. 

I can tell you right now that all of my life I have suffered with constipation and then it turned into full blown celiacs.  Do you have any other symptoms other than the constipation and stomach pain?.  Make sure to write a list of any symptoms you may have and bring it with you if you choose to go see a GI doctor. Celiacs has 300 known symptoms that it is associated with.  From just reading this post, it is clear to me that you are VERY sensitive to gluten and that is a clear indication that it needs to be watched. 

Best of luck with everything and I hope that has helped. Congrats on the wedding and blessings on your new marriage and future babies!!! 

 

P.s. I found out I had celiacs with my 4th child and I was gluten free all through out the pregnancy. I didn't gain anything due to being on that diet but the baby was taking all of my food and was healthy. He is still a very healthy little man. Be at peace. 

 

[LookingforAnswers15]

Hi,

since you said that you know gluten makes you sick, I think I would just stay away from it until after you get a child and then if you can, go back to eating gluten and get tested. However,at that point you might not be able to do gluten challenge and have to be ok with not having an official diagnosis. It is a shame that your doctor and/or dietitian did not recommend any blood tests at that time instead of just telling you to go gluten-free. I believe glutenfreemomma told you the main blood tests (IgG,IgA,tty). There is also a genetic test that will show if you have that gene. Nvsmom made a great list of tests for celiac disease (I am not able to look it up for you now) and it is often cited on here, so you can easily find it. Some of the blood tests may come back negative even for people with celiac disease so biopsy is the most reliable. However, I am thinking that if you have celiac, it is possible that the blood tests will still reveal it so if you can, do them ASAP. My reasoning- my blood tests were so out of the normal range that even after one year, the antibodies are still elevated and show in my blood. Also, since you have such a big reaction to just eating a salad, if you are determined to try to get pregnant right after the wedding, I am not sure that eating anything with gluten would be good for you. Your body might be still healing from not only from getting glutened this time but even from previous consumption. Recovering from gluten can take days, weeks, or months. I am not sure if my advice is the best one but this is just my reasoning. There are some very knowledgeable people on here, so they might be able to give you a better advice. Definitely talk to your doctor about this. Congrats on your wedding!

[ayla89]

Thank you GlutenFreeMomma and LookingforAnswers.

I read an article saying that once a person with celiac/gluten intolerance cuts out gluten in their diet, their bodies react more strongly to even smaller amounts of gluten as opposed to before they stopped eating gluten.

I think there may be grain of truth to it...I've been eating gluten and wheat all my life. Growing up on a farm, we ate a lot of home made bread, pies, pasta and after moving to city of Adelaide & becoming a shift worker, this was supplemented by pizza, fast food, chocolate etc. My diet wasn't overly bad, but I most certainly ate a lot of gluten and definitely with every meal.

There was a time my boss asked me to get tested for Chronic Fatigue Syndrome before returning to work after I fell asleep at my desk...which looking back, happened to be after a work lunch party eating lots of pizza and treats - a connection I didn't make until now.

I've also always had issues with constipation or bloating.

My symptoms at the moment are:

- Ridiculous sedative like fatigue after eating gluten, I can basically feel it now when I've accidentally eaten it within a couple of hours. My fiance can tell too, as I am not responding so quickly to conversation, sometimes mumble or stumble on words, and I fall asleep in my chair or wherever I happen to be. I remember eating pizza (before gluten free days) at a party, and falling asleep on couch for hours, barely able to be roused due to being so sedatively-like zonked... I've had friends get upset with me when I appear not interested in their conversations.

- Fuzzy brain. Related to the fatigue I guess. My fiance and I work for ourselves. Often he'll ask me to call such n such, and ten minutes later I call him and say 'what was it you wanted me to do...i know you dont me to do something but I cannot remember!' Just yesterday I was talking with a friend and describing my brothers behaviour at a party recently, and I tried to say 'he wasn't tipsy, he was all out drunk'...but I could remember the word 'tipsy'...I knew it started with a T but I couldn't find the word in my head to say. It was a frustrating feeling.

- Contipation, bloating and stomach cramps. Often all together. Frustrating trying to lose weight for a wedding dress when you look 4 months pregnant all the time. I actually found myself wearing loose clothes after we announced our engagement in September '15 cause I was worried someone would accuse me of getting engaged only due to pregnancy cause I LOOKED pregnant...

- Every now and then I get a numbness in my fingers, most often my little pinky fingers...nfi what that is about...

- Headaches quite regularly but thankfully no migraines.

I am going to call a GI doctor (there aren't many in Adelaide unfortunately...) to see if I can get a blood test done asap. Maybe LookingForAnswers is right and it might still be in my blood etc...worth a shot.

Any more advice from anyone else is welcome.

[Irene Joanne]

I wouldn't risk doing the gluten challenge. I just found out a little over a month ago that I have celiac- I did get the blood work and the biopsy, but only  because they were done within a short amount of time. My worst symptoms were awful bloating and indigestion after eating, extreme exhaustion, sore everywhere- felt like I had the flu for 9 months straight, awful brain fog, anger issues, gall bladder pain( yet all gallbladder tests were fine) 

one month into the gluten free diet, I accidentally ate gluten. I thought Rolo chocolates in Canada were gluten free and I was wrong. I got way sicker than I ever did while still eating gluten regularly. It was awful and four days later, I'm still miserable. I would never try the gluten challenge when it makes me so sick. 

Typically where I live it takes months to get in to see a gastrologist for a biopsy consult- then it could be months to actually get the biopsy. I would try the blood work still as those levels take a while to go down? 

[Irene Joanne]

Also- make sure your thyroid levels are good before pregnancy. My thyroid antibodies are sky high and most likely linked to having undiagnosed celiac for so long. Thyroid disease and celiac are very connected. 

[glutenfreemomma188]

Honestly, from what you describe, I would say you have ALL of the classical symptoms of Celiacs disease right now. Minus the diarrea but I have constipation and celiac disease so, you don't have to have diarrhea all the time to have celiacs. Everyone is different. I have to agree with Irene Joanne, I don't think you need to do a gluten challenge, specially when there are so many symptoms going on right now, that tells me that you are still having issues. Could it be that somehow you are still getting a little cross contamination somewhere?, that is always a possibility.  When I go to talk sometimes, I will stumble over words, replace the two beginning letters and add different ones, so sometimes my sentences do not make any sense. For example, I could easily replace the word Step with Dep and my sentence would sound something like this, "Watch your dep."  I believe very strongly it happens when I am overly fatigued. I experience the numbness off an on, or the tingles of my nerves & I also experience weird electrical zaps in my face & other parts of my body at times. I also have what is called benign facilitation syndrome which means my muscles twitch on almost a constant basis when I am inactive. The minute I walk around or do activity, the muscle relaxes. My body cannot handle dairy either, so about a half and hour to an hour after I consume something that has a lot of dairy in it, I will look like I am about 7-8 months pregnant. This is how my stomach reacted to gluten as well, so I completely understand.  Celiacs affects a person beyond the GI tract. It can affect the brain, the muscles, the nerves, just about everything. So, honestly, I think you are on the right track of getting your blood tested. I think this will give you a good peace of mind.  Please let us know what your results are on here. Feel free to message me because I don't know how often I will be able to be on this forum (Busy mom). 

 

Oh and, if you cannot find a GI doctor, I think your regular doctor would be able to preform the test or have the blood test ordered for you. Just let your regular doctor know what your symptoms are and that you NEED to get tested for this. Make sure your health insurance will cover the test though because it can be expensive. Usually the health insurance will allow for this test if it was ordered by your doctor but different states and different insurances mean different rules, so I cannot say for sure. Just make sure. 

Best of luck with everything and let me know!!