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Newly Dx - Reading And Learning A Lot

moosemalibu

By moosemalibu
in Coping with Celiac Disease

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moosemalibu Collaborator
moosemalibu
Posted

I was recently diagnosed with celiacs via blood test.  I am awaiting an appointment with a specialist (in October - really? that is the fastest I could get it) to, I will assume, order the biopsy/endoscopy.

 

I am 28 and I started to have symptoms about 3-4 months ago. I had bloating (I looked pregnant - which to someone who is trying to be physically fit and compete in the fitness competitions - not a good look), D, cramping, nausea, insomnia, mouth sores. It got to the point where I thought I may be gluten sensitive so I voluntarily took gluten out of my diet (I am a calorie counting, food weighing, portion controlled food person so this wasn't gonna be hard, I thought). But obviously I didn't get the hidden gluten or the cross contamination issues figured out. I didn't research it well enough. So after chronically being late to work or missing work I finally made an appointment with my doctor.

 

And now i'm here. I think the most frustrating part is I know what's going on but my symptoms are taking time to go away. I think I have lactose intolerance too as I had a seriously bad stomach cramps/D episode last night through this morning after eating gluten-free ice cream. I don't eat much dairy except for greek yogurt so I never even thought twice about it as I have never had an issue. After reading the newbie sticky it says that the microvilli synthesize lactase and so I guess my microvilli are too damaged to do any work. 

 

I'm just here for support and learning. I don't want to be sick anymore. I want to be strong and healthy and continue my training. I workout for 2 hours a day 6 days a week. I still have the desire to do it but I just cannot fathom my body is able to take in the nutrients to support this. It's frustrating.

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kareng Grand Master
kareng
Posted

If you want to have a positive endoscopy, you should keep eating gluten.

As you start healing, you will start absorbing more and more of your food. If you feel good exercising, continue to exercise. Cut back a little if you think that might help.

moosemalibu Collaborator
moosemalibu
Posted
  • Author

Thank you Karen. I don't know how I can justify eating gluten not knowing when my endoscopy will be. It's too painful. But I will keep that in mind knowing that the test may not be accurate if I am gluten free preceding it. 

 

I love lifting and being active so I don't think I will change my routine very much. Appreciate the support on this forum. 

nvsmom Community Regular
nvsmom
Posted

Welcome to the board. :)

 

Like Karen said, you will need to eat gluten to guarantee an accurate biopsy, but I think since you have already been diagnosed as a celiac with a blood test, there is not a strong need to continue to damage yourself with gluten for "proof" of celiac disease. If you need to eat gluten-free, you can look at the endoscopy as a check on the damage and something to refer back to in the future if you end up as one of the unlucky ones who heals slowly.

 

Another option to consider is that some doctors only require a two week gluten challenge for a biopsy, so if you need to go gluten-free now you could resume eating gluten a couple of weeks before the test... That's often hard to do once you start feeling a bit better though.

 

That's great you are doing fitness competitions. I worked towards a figure competition once (before diagnosis) but I couldn't trim down enough for it... and your right, the pregnant look doesn't help.  LOL

 

Hope you feel well soon.

moosemalibu Collaborator
moosemalibu
Posted
  • Author

Thank you Nicole! The dietary restrictions to get you down to a stage weight is a bit extreme - I agree. It's hard to maintain - and with this issue it's impossible right now. But that is OK. I want to be healthy - that is my #1 priority. 

 

I guess I will know more about the gluten challenge when I see the specialist in October. So far away! My birthday is in September so it should be interesting to see how I get along with the gluten free sweets. I have read many recipes and it seems complicated to have a consistent product as you have to mix the flours to get a nice cake texture. But I don't really need cake in my life but for birthday's it would be nice. 

 

Thanks again for your support and advice!

bartfull Rising Star
bartfull
Posted

Udi's Double Chocolate Muffins. You can find them in the health food store. They are BETTER than any chocolate cake I have ever tasted. They are the size of a large cupcake and come four to a package. They are frozen but don't take long to thaw out. Honestly, these are SO good! Put a candle in one on your birthday and enjoy!

defeatwheat Rookie
defeatwheat
Posted

      Coming from someone who had the blood test and the biopsy, I wish I had just went with the blood test. My dad and uncle who are twins have Celiac, the blood test was positive, etc etc. I know there are others who have different directives or opinions on this. I'm just offering my experience. If I hadn't had a tooth chipped while unconscious and not scared my spouse because I was not waking up normally because I had undiagnosed sleep apnea, then my experience may have been different.

      Some things that you may not be able eat  at first may be do-able later. I am gluten free for over eight years and dairy free probably for about a year. Dairy was hard to add, but my health improved. If not medically necessary for me I would eat just about anything. Best wishes to you in this journey.  

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moosemalibu Collaborator
moosemalibu
Posted
  • Author

I love chocolate so I will be on the lookout for the muffins! Thanks for the tip. I may slather some peanut butter over it and call it a day! 

 

DefeatWheat - I see a lot of people on here just go with the blood test and feel better by elimination and call it good. If I am feeling great and they ask me to glutenate myself I may just say No. I hate this feeling of sickness so I cannot say what I would do. But I am glad to hear your opinion on the matter. 

I'm very hopeful that I will not have to exclude dairy forever as I love it so!

nvsmom Community Regular
nvsmom
Posted

My birthday is in September so it should be interesting to see how I get along with the gluten free sweets. I have read many recipes and it seems complicated to have a consistent product as you have to mix the flours to get a nice cake texture. But I don't really need cake in my life but for birthday's it would be nice. 

 

 

Coconut flours and almond flours are easy to work with and require fewer flour combinations than when dealing with the starches and rice flours. They are also lower in carbs which is another bonus.   :) Try googling almond or coconut flour cupcakes and I'm sure you'll find some tasty treats.

 

We are dairy free too and substitute coconut milk, cream or oil for most baking recipes with lots of success. 

Tbolt47 Newbie
Tbolt47
Posted

Moosemalibu,

 

This site may be of interest to you :Open Original Shared Link

 

The author is a woman who is an MD, diagnosed with Celiac, in addition she is an avid runner. Very informative and supremely easy to relate to.

 

When I was initially diagnosed aprox. 9 mo. ago ,one of the most frustrating symptoms for me was insomnia.Even though some days I was so fatigued, it was  difficult to put one foot in front of the other, I still could not fall asleep at night.

Prior to my diagnosis I ran between 20-25 mile a week ( for 30 + years). Initially, I stopped all together. After  3 weeks I picked it up again. and found regular exercise was instrumental in restoring my sleeping pattern.

 

It does seem counterintuitive to continue to eat gluten to insure  a biopsy result. However, you can request  HLA DQ 2,8 gene test, no " gluten challenge " involved and you will know if you carry the necessary gene to develop Celiac.

 

Best of Luck whatever your decision.

srall Contributor
srall
Posted

I'm so glad you have your diagnosis.  I hope this doesn't sound at all cruel, but whenever someone in my life tells me they are diagnosed with celiac, I actually feel a little happy for them because I know (if they stick to the diet) that they are going to feel so much better very soon.  

 

I second the Udi's chocolate muffins.  They are so good.  They actually still make me a little sick, but sometimes I just have to do it, like a birthday.  

 

I do not have a celiac diagnosis, because after a negative blood test (hadn't been eating gluten for months) I just could not face going back on gluten for the endoscopy.  But whatever you decide to do is fine.  If I had the blood test I'd probably call it a day, but some people like to know the extent of villi damage.

 

I hope you start to feel much better very soon!

moosemalibu Collaborator
moosemalibu
Posted
  • Author

Thanks Nicole - I have googled the coconut and almond flour recipes - they seem a lot easier. I already make coconut flour protein pancakes in the morning for breakfast so I have coconut flour already. :)

 

Tbolt- I have bookmarked that page to read. It looks so informative and fascinating. Insomnia is the worst. I was getting insomnia really bad with no explanation and no other symptoms manifested for months! I had no idea what was going on and this was being dead tired from heavy strength training and high intensity interval cardiovascular training. It's crazy. I still am having insomnia issues but I hope they will get better over time being gluten-free. 

 

Thanks for the gene tip. I'll see what happens...

 

Srall-  no offense taken. I am glad to have the knowledge and power to heal myself - FINALLY! We went grocery shopping tonight after we purged out all the contaminated food and I bought those muffins! I am excited to try them. 

eers03 Explorer
eers03
Posted

Welcome to the board!  When it comes to baking a gluten free cake, I choose not to reinvent the wheel.  I will buy a chocolate gluten free cake mix and just follow the instructions.  They turn out really great.  I do the same with the icing.  The pre-made icing doesn't spread very well so buy the mix, follow the instructions and whip it up.

 

Delish.

moosemalibu Collaborator
moosemalibu
Posted
  • Author

Welcome to the board!  When it comes to baking a gluten free cake, I choose not to reinvent the wheel.  I will buy a chocolate gluten free cake mix and just follow the instructions.  They turn out really great.  I do the same with the icing.  The pre-made icing doesn't spread very well so buy the mix, follow the instructions and whip it up.

 

Delish.

I loved to bake prior to diagnosis. I mean I was the designated cupcake baker for all the employees birthdays at work. Everyone CRAVES my cupcakes. But I won't be doing any traditional cupcake baking anymore in my house. I've struck gluten from my house and I'm not inviting him back. I will have to learn the gluten-free recipes and start over. Hopefully my coworkers won't be too bummed.

 

I'll have to try the boxed mixes for a reference point though, for sure!

nvsmom Community Regular
nvsmom
Posted

I loved to bake prior to diagnosis. I mean I was the designated cupcake baker for all the employees birthdays at work. Everyone CRAVES my cupcakes. But I won't be doing any traditional cupcake baking anymore in my house. I've struck gluten from my house and I'm not inviting him back. I will have to learn the gluten-free recipes and start over. Hopefully my coworkers won't be too bummed.

 

I'll have to try the boxed mixes for a reference point though, for sure!

There is a book called Artisanal Gluten-Free Cupcakes that has really good recipes, but it requires a few flours. The gingerbread and orange cranberry cupcakes are very nice.

1desperateladysaved Proficient
1desperateladysaved
Posted

I am glad to see you can now be gluten free and you are now feeling better!  You certainly seem to have had a positive response to the diet which is always the final test for gluten problems.

 

Have you had your nutrient levels checked?  Since you are feeling better, perhaps they are okay.

 

If you have any trouble, you know where to come.

 

D

moosemalibu Collaborator
moosemalibu
Posted
  • Author

Thank you D! I feel a lot better but I still am having GI symptoms. I eliminated dairy so that I think should help. I am logging my food so I'll know if I have any other food intolerances. 

I have not had my nutrient levels checked. I see a specialist in October. I suppose I could email my doctor and ask them to run something in the interim. That's a good idea, actually. 

 

Did you find that knowing how much to eat being a problem? With as many trips to the bathroom that I make per day I feel like I don't know if my usual 1600 calories is enough. (Keep in mind I'm a body builder type - so I want to lower my body fat). But ultimately I don't want to hurt myself by going too low.

moosemalibu Collaborator
moosemalibu
Posted
  • Author

So sorry if this is TMI but I just wanted to share how good I feel and that I started taking probiotics and digestive enzymes Saturday [gluten-free with no CC since Aug 22 (day of diagnosis), gluten-free with CC since June (suspicious of gluten intolerance but not educated enough about CC)]. I had my first normal BM followed by 2 abnormal BM's today but I see that as progress because I cannot even tell you when I've had the last normal BM. Just thought I would share with those that understand.  ;)

  • 2 months later...
moosemalibu Collaborator
moosemalibu
Posted
  • Author

Just got my HLA Celiac disease typing results. I am negative for HLA-DQ8 but I was positive for HLA-DQ2. 

Does anyone know what the rest of this information means? My doctor hasn't told me anything I was just notified automatically via the online health record system that I had a new test result....

 

 

HLA-DQ2   Positive   HLA-DQ8   Negative   Hla-Dqa1   2   Hla-Dqa1   5   HLA-DQB1*   201   HLA-DQB1*   202   RESULTS REVIEWED BY:  
Maria P. Bettinotti, Ph.D.,D(ABHI)
Director, HLA and Immunogenetics

Typing performed by PCR and hybridization with sequence
specific oligonucleotide probes (SSO).

 

NoGlutenCooties Contributor
NoGlutenCooties
Posted

 I don't know how I can justify eating gluten not knowing when my endoscopy will be. It's too painful.

 

It's actually more important to not go gluten-free leading up to the bloodtest than it is the endoscopy - as long as you don't wait months to get the endoscopy.  I had a positive bloodtest the beginning of October and went completely gluten-free the minute I got the call from the doctor.  It took 3 weeks to get into the Gastro-intestinal specialist, and I had the endoscopy 1 week later.  The GI doctor told me that I'd be fine, as long as I didn't wait a few months before getting the endoscopy.  The damage doesn't go away that quickly.

moosemalibu Collaborator
moosemalibu
Posted
  • Author

It's actually more important to not go gluten-free leading up to the bloodtest than it is the endoscopy - as long as you don't wait months to get the endoscopy.  I had a positive bloodtest the beginning of October and went completely gluten-free the minute I got the call from the doctor.  It took 3 weeks to get into the Gastro-intestinal specialist, and I had the endoscopy 1 week later.  The GI doctor told me that I'd be fine, as long as I didn't wait a few months before getting the endoscopy.  The damage doesn't go away that quickly.

 

I still went through a gluten challenge for my endoscopy which I had last month. I had a positive biopsy for celiac and also have the HLA-DQ2 gene so I have 3 tests telling me I am celiac: the serology, the biopsy, and the genetic marker. I actually had some villi on my biopsy so they were not completely atrophied from the 3 weeks of gluten challenge. I also know I likely got diagnosed fairly quickly because I am very in tune with my body and I think caught it quicker than most.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

I still went through a gluten challenge for my endoscopy which I had last month. I had a positive biopsy for celiac and also have the HLA-DQ2 gene so I have 3 tests telling me I am celiac: the serology, the biopsy, and the genetic marker. I actually had some villi on my biopsy so they were not completely atrophied from the 3 weeks of gluten challenge. I also know I likely got diagnosed fairly quickly because I am very in tune with my body and I think caught it quicker than most.

 

 

Sorry... didn't realize I was responding to an old post when I first replied. 

moosemalibu Collaborator
moosemalibu
Posted
  • Author

No worries - I realize that I have another thread that is more up to date with my testing but for some reason I forget. Dang brain fog.

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