I'm So Confused. :(

[StephieStep]

Hello! I'm new here. I'm hoping to clear up some of my confusion. 

 

My first problem is this:

My GI suggested I cut gluten for a couple weeks. I was having digestive issues along with other seemingly unrelated issues (hormonal problems, tingling fingers and toes, water retention/facial swelling, brain fog, etc). I didn't know anything about Celiac or gluten intolerance. I asked if there was a test I should have first and he told me he didn't want to do the test but to eliminate gluten. I did so (which I am now regretting). A few friends of mine with Celiac told me that 2 weeks probably wouldn't be long enough to see results if gluten was the problem, so I went longer. By 6 weeks I was feeling great! Felt like myself again for the first time in years. The swelling reduced, the tingling stopped, my lower back stopped aching, my digestion improved and my mother and husband noticed huge improvements in my mood. I started to do more research about Celiac and realized that my 4yo son has many of the symptoms. I mentioned it to his doctor who did a blood test which came back positive. THEN I read Celiac is genetic and THEN I read that once you go on a gluten-free diet you can no longer be tested. I've been gluten-free for 10 weeks. I am feeling frustrated because I hate to go back on gluten to have the test done. Is there anything I can do?

 

Secondly,

The relief I felt after going gluten free was the first time I've felt good in years. It seemed completely obvious that gluten was the problem, as cutting gluten was the only change I had made. But by about 6-8 weeks some of my problems started to return. Does this mean that my improvements were just a huge coincidence? Or did cutting gluten make me even more sensitive and now I am reacting to possible cross contamination? My digestive issues returned, and my mood started to decline again, but the water retention doesn't seem as bad as it did pre-diet and my belly isn't as bloated. So I am still showing improvements, but it's like I took a step back almost. Are these fluctuations normal at the beginning of a gluten-free diet? I am feeling a bit discouraged.

 

Any advice or ideas would be greatly appreciated! Thank you!!

 

Steph

[notme]

a person's response to the gluten-free diet is one of the criteria a doctor should use as a diagnostic tool.  so many doctors tell their patients to 'try' gluten free and then when it works, tell them to go back on gluten so they can have an accurate test. <seems like calculated torture lolz)  not me - i began to gain weight immediately so my blood test came back negative but doctor was too afraid to have me to back on gluten/lose any weight as i was so malnourished.   they truly need a better test.  your child tested positive - if you have had other illnesses ruled out, it's a safe bet you have it, too.  

 

once you have cut out all gluten, some of us do get more sensitive.  your antibodies are all 'geared up' so if you accidentally get cc'd, it hits you like a ton of bricks.  have you read the newbie thread?

 

 https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

you may be getting glutened where you don't expect it - like shampoos/lotions, etc or cutting boards/wooden spoons.  

 

good luck

[bartfull]

Yes, it is VERY common to take a giant step forward and then take several steps back. I think most, if not all of us did. It seems that our bodies are giving us a signal that we CAN feel really good again, but it takes a while to heal and sometimes at first we will react to foods tha should be perfectly safe for us. I myself felt so good a few weeks in that I felt like I was 12 years old. Then I started reacting to other foods and started feeling lousy again.

 

A lot of us discover other intolerances that were being masked by our celiac disease. Dairy is something we should all give up for a few months at first because the part of our small intestine that is damaged by celiac is the part that digests dairy. Most of us were able to add it back to our diets once we were healed. Soy, corn, oats, and nightshade veggies (potato, tomato, peppers, and eggplant) are other foods that give some of us trouble.

 

You should read the Newbie 101 thread. It will teach you about how to avoid cross-contamination. Things like out toasters, scratched teflon or plastic containers, strainers, wooden spoons and cutting boards all need to be replaced because you just can't get all of the gluten from previous uses out of them.

 

Also, avoid restaurants at first. And it would be best to stay away from gluten-free substitutes at first. Most of them are just empty calories anyway. Try to stick to whole foods at first. Meat, fruit and veggies, preferably fresh and organic. (I was actually reacting to pesticide residue even though I washed everything well. I can now eat regular produce from the grocery store, but it took a while.)

 

If your son has celiac, chances are you do too, based on genetics and your results on the gluten-free diet. It's up to you if you want to get tested, but you will have to eat gluten again for about three months. A lot of us are self-diagnosed. Me for example. My Mom was diagnosed by biopsy. When I started with the same symptoms she had I knew I needed to go gluten-free, and when my symptoms cleared up, even my doctor agreed that I had celiac. If he was satisfied that I had it, that was good enough for me.

 

Expect ups and downs. Expect emotional ups and downs too. It's a big change and it takes some getting used to. Come here for support and to get answers to the many questions you will have. We're here for you.

[bartfull]

Oh yeah, you need your own butter and condiments too. A knife that dipped into the peanut butter or mayo, then spread onto bread and dipped back into the jar has just contaminated the whole jar.

[StephieStep]

Thank you for the responses! I feel a lot less discouraged now knowing that it is common to have ups and downs when cutting gluten. I have faith that the relief I felt in the very beginning will return. I hope hope hope so! I've been pretty careful about CC but I do need to replace my cutting board, non-stick pans, plastic spatulas/spoons, etc. I don't use my toaster anymore. Are microwaves a concern? When I microwave anything I usually cover my food with either plastic wrap or a paper towel. Is that sufficient? I do have my own separate condiments, butter, etc. I just feel like I haven't changed anything since I started on the gluten-free diet, so it's strange to me that I'm feeling bad again after feeling SO GOOD in the beginning. It was such a relief. I just want that again! I will keep pushing forward. I appreciate your answers so very much! I have no one else to talk with about this and I don't trust my GI very much at this point... :/

[bartfull]

One of the weird things about this is that after we have been off gluten for a while, our reactions to it get stronger. You are probably getting CC from the cutting board and plastics. At first it didn't bother you because you had eliminated enough gluten for your body to go, "WOO HOO!!" But now it's saying, "Hey, wait a minute, I'm still getting traces of this poison and the only way to let you know is to get sick again."

[Lock]

You can always have the genetic test. Being off gluten won't effect that at all. But I wish your doctor had drawn blood for the serum tests BEFORE you cut out the gluten. At this point, it doesn't seem worth going backward, but I agree with what the others said about cross contamination and dairy.

 

When I first cut way back on gluten, I was not even trying to avoid gluten. I was cutting out most "carbs". The huge improvement I felt may have been getting off the sugar roller coaster as well as wheat. But now, I notice I am a lot more sensitive to even a little bit of sugar, and I am having problems with dairy, so this is going to be a slow process to straighten out a malfunctioning gut.

 

If you get the gene test, and it is positive for celiac or gluten sensitivity, then you can take that to the bank, and know you need to stay off gluten. It won't prove that you had villous atrophy  but it will tell you for sure that you've got the tendency and that gluten is bad for your system in any case. If the genetic tests come back that you do not have any of the gluten sensitive gene types, that still does not completely rule out that gluten is your problem. If being gluten free makes you feel better you should stay with it.

[StephieStep]

Oooh! The genetic test is really great idea. I think part of my frustration is "Am I doing all of this for nothing?". I hate having that worry. I loved craft beer, I don't miss a lot of foods I was eating but I did love going out to eat with my husband.. and now if I really am reacting to CC it obviously is worth it to cut those things out. But still.. in the back of my head.. "Am I doing this for nothing?".. again, and again. Also.. is it worth buying new pans and cooking utensils, etc.. If my genetic test came back positive I would feel much more confident about all of this. Thank you for the suggestion!