HavaneseMom

I see dairy has been mentioned a few times. Nothing gives me "C" like cheese! I love cheese and even a small amount will back things up and bloat me. I just gave it up again a couple of days ago. If you don't want to give up all of your dairy, maybe try cheese first. It takes me about a 1 1/2 to 2 weeks after I quit eating cheese for things to start working properly and regularly. I love cheese so much that I keep going back to eating it, then end up miserable from C and irregularity, which then leads to nausea, etc. and have to start the cheese detox process all over again. Good luck!

My colonoscopy prep was all OTC stuff. Milk of Magnesia first. Then 2 jugs of Gatorade mixed with a bottle of Miralax.

Good luck with your procedure!

To me it sounds like you are having a stress/anxiety response. I have this too and joke with my husband that I am a "nervous pooper".

I have Celiac and while my anxiety related issues have slightly improved on a gluten free diet, I still do often have this problem in similar situations you described. I am constipated most of the time, so it is a real change in my pattern when this happens. If I know I am going to be really anxious about something and have the urgency problem in a social situation where it would be inconvenient, I will take a little Xanax to calm my nerves and it does help. Otherwise, I just accept the fact that I am a nervous pooper :-)

I had all of your symptoms, except for the nail problem. My doctor wouldn't test me either because I didn't have diarrhea. When I finally gave up on him and went to a Gastro doctor I was tested right away. I'm guessing you are in Canada based on your name. Can you go to a Gastro doctor easily with your health care system? I really think for the most part Gastro doctors are willing to test and diagnose Celiac, much more so than general doctors.

Mine was 19 at diagnosis, and was up to 29 at my 6 month follow up. My doctor said I should try to get it up to somewhere between 50-60 for optimal benefits. I had been taking 3000-5000 IU a day for 6 months, and it only went up 10 points. It must be a slow one to rise for some people. I am in Michigan and get very little sun too.

I have a shared kitchen and a great tip I saw on this forum was to designate one counter only in the kitchen for gluten food use. My husband has his toaster on that counter and pours his cereal on that counter, makes his sandwiches there, etc. This way I don't have to worry so much about random crumbs ending up in the rest of the kitchen and in my food.

As far as the pets go, I did switch my pups treats to gluten free and I their food already happened to be gluten free. I think she would be ok to feed them gluten containing food if she has to scoop the food, as long as she washed her hands very well after. It might be more of a problem if she were pouring it from a big bag and dry food particles could end up floating toward her face. If it's a crumbly type of food it might be less of a risk to let someone else feed them. Also, I have heard we should be cautious about letting the pets lick our faces after eating gluten containing foods.

That reminds me of something else. I know she is still young, but when she is dating it's a good idea to be careful not to kiss someone right after they eat gluten. I have read some post by others here where their dates will eat gluten free also so they can share a good night kiss. Not a fun thing for a young person to have to worry about when dating, but I thought I would mention it in case it hasn't come up yet.

I don't have any written evidence for this but I have heard and read that Centrum vitamins which may be the most popular multi (I used to take them myself) are coated with shellac which is the same thing used in wood finishing. I used to get colonics and the lady I used to go to said she has seen them come out the other end completely whole. This is bordering on TMI maybe but I read a story about people who clean out port-a-potties for a living, finding them whole in the bottom of the tanks. The human body apparently cant digest them.

I have heard this too FruitE. I used to use Shaklee multivitamins and my sales rep had told me that their supplements were not "Golden Bullets". I had no idea what she was talking about. She said some of the supplements out there didn't dissolve and just ended up in the toilet whole, and since they are expensive, they were referred to as Golden Bullets.

Hello,

I use Thorne Research brand. I use their Meta-Fem and take 3 a day, one with each meal. They don't bother my very sensitive stomach.

I've been tested for anemia, asthma and the like. All negative =(. Yes, the problem is aggravated significantly when I'm up and moving.

I'm glad to hear they ran all of those test. If the problem continues and your doctor can't figure out the what is causing it, you may want to take a closer look at your lab results. Some of the iron test have very large reference ranges that are considered "normal" results. For example, Ferritin at my lab has a reference range of 11-306. If your Ferritin were to come back at 12, it would be in the normal reference range, but you would be feeling much different than a person whose number came back higher say at 150, and you may have symptoms related to low iron, even though technically you are in the normal range. If you are concerned, your doctor or lab would be able to get you copies of your results to look over to see where your iron numbers fall within what is considered the normal ranges.

What is the likelihood this will help clear up some of her psychological symptoms when she is permitted to go gluten free? She is currently not gluten free until she sees the specialist tomorrow to determine is a biopsy is necessary. To be honest, and by her own admission, those are the worst problem.

Hello,

From what I have read and experienced, a gluten free diet could help her psychological symptoms. It might take a little time to see a difference. Here is a great story I came across about a child who's behavior drastically changed on a gluten free diet. It is a bit of a read, but if you get through it, you will see the difference was pretty amazing:

Open Original Shared Link

Have you had your iron tested? Celiac can lead to anemia, which can cause shortness of breath and labored breathing.

My shortness of breath was pretty bad by diagnosis, but would vary day to day. Do you notice it more when you are physically active?

I don't mean running, but just little things like walking down the hall? Even walking up a flight of stairs would leave me very winded.

Hopefully your doctor can get to the bottom of these issues for you.

The hunger can be normal. One of my least favorite symptoms before my diagnosis was the excessive hunger. Then when I was diagnosed, it went to a whole new level. I was painfully so hungry for quite a while... maybe 3 or 4 months straight. No matter what I ate, I was still so hungry that my stomach would hurt. I would have to get up in the middle of the night and eat a bowl of cereal because I was so hungry that I couldn't sleep.

I think I had asked about it here at the time, and was told that it was a normal symptom for some, because the body is deprived and can now absorb nutrients and wants more and more. Don't worry though, that hungry feeling did taper off. I still have days when I am more hungry than I should be, but it's not nearly as bad as it was in the beginning. I think my iron deficiency made my hunger worse, which I see you have too. Mine is almost resolved now from being on the gluten free diet and taking supplements.

Hi coffngrl,

You have already received some excellent advice, but I thought I would chime in with my experience.

I have seen a psychologist at a couple of point in my life, and went for just a couple of visits both times. Once when I was about 19 to help me deal with my parents divorce and once when I was about 23 when terrible panic attacks set in (which I now know are probably Celiac related). Both times I was able to get some pretty good coping strategies just from a couple of visits. It was pretty low key and they just asked me some questions and let me talk, and then offered some advice or gave me some suggestions about how to deal with situations. It was kind of just like talking to a new friend who gives really good advice.

I remember that you have had some bad experiences with doctors, so hopefully you will find someone you like in this field right away. I usually check healthgrades.com or vitals.com for reviews of doctors before seeing anyone new.

I see you have squash on your can't eat list. Is it all squash? I can't tolerate the bigger orange type squashes (can't think of their names), but zucchini and yellow squash are my friends. I find them pretty soothing and they help keep things moving too :-). If you are in the Midwest like me, I'm sure you have already tested them. Lots of it around in the summer here.

I would really avoid baking with regular flour if at all possible as someone with Celiac.

Just imagine the little dust clouds of flour when your pour it in to the measuring cup and then again when pouring it in to the mixing bowl and again when mixing the ingredients. It's very possible particles could land on your lip and be ingested, or if your were talking or breathing through your mouth, those particles could end up in your mouth and be ingested and make you sick. It's sweet that you want to make your family regular cake and bread, but it would be too risky for my comfort. In fact, I called a restaurant this weekend to see if they had any Celiac safe food and was told they can't guarantee anything they have is 100% safe because they use flour in the restaurant and it can end up anywhere. I would definitely put your clean dishes that are in the strainer into the cupboard before using regular flour too. Hope you feel better soon.

Thanks so much for sharing this!

I can finally stomach supplements and am going to start a regimen soon. I will be sure to include Magnesium since I have the big C and bloating too. I hope it works as well for me as it does for you.

Looks like it's just the colitis giving me hell...non-stop - and no matter what I eat it makes me sick.  They want me on steroids again, and I said no - didn't work the first time, and that was an awful experience.  So then they suggested Uceris, which I just got done with 60 days of...it helped some when I was on it, but the day I stopped everything fell apart again.  This has to be the most frustrating thing ever!  Sorry, needed to vent...

Sorry to hear this. I sure do hope your colitis calms down soon. I mostly have "C" and I feel so bad for people with "D". Yours sounds like a really bad case of it that has lasted a very long time. Hope you feel better soon.

Thanks everyone for the great advice and tips!

I am in Michigan, so we don't have some of the places that were mentioned, but the self serve frozen yogurt trend has finally made it's way up here and I am seeing them all over now. One local chain in particular claims all of their yogurt is gluten free and I have asked about it several times and am always told they are all gluten free because they are made from syrups. Um, the last I knew being made from a syrup didn't make something gluten free. I would like to think that management has done their research and knows what they are talking about, but I would really like to see the ingredients myself. Another local chain does have some flavors marked as containing gluten and list other allergens too, so I think I would be more comfortable going there since they seem to be very allergen aware. I think the chains that have all of the ingredients listed online will give me great peace of mind too.

Thanks again!

Hi Kareng.

 

I'm glad to hear you get TCBY and Dairy Queen soft serve. If you eat it, I feel safe eating it .

I'm guessing TCBY has a good procedure to clean between flavors, but I will ask at my location just to make sure, in case a flavor with gluten was in the machine before a gluten free flavor.

I see McDonalds soft serve vanilla is gluten free too.

 

Thanks!

Hi Everyone,

I am just wondering if there is anything you know of that we can safely eat from Ice Cream or Frozen Yogurt Shops?

When I was first diagnosed, I ordered some hand scooped frozen yogurt that I was told was gluten free, and then my husband pointed out that the scoops they use to get the frozen yogurt out are used in all of the tubs, so there would be a high risks of cross contamination and I didnt eat it. So I think the good hand scooped ice cream and fro yo are out of the question.

Do you feel comfortable getting soft serve ice cream or fro yo in a cup if they tell you it's gluten free? Can we trust that they machines are cleaned well between flavors, etc? There are a bunch of self serve type frozen yogurt places popping up around here that claim all of their flavors are gluten free, but don't publish ingredients. I'm not sure if I should just trust them?

By the way, that hand scooped frozen yogurt I was told was gluten free and ordered in fact wasn't. It was at TCBY and my instinct told me to look it up the ingredients on their website and it did contain gluten! It was a good lesson, but now I am so suspicious.

Is it just best to give these places up?

Hi Again,

Sorry the quote function doesn't work for me on this computer.

To answer your question about if I know what caused the blip, I don't know for sure what caused that 2 month blip. Some of the foods that were bothering me were certified gluten free corn based cereals, corn pasta, tea, broccoli, tomato, anything spicy, chocolate, dairy and I know there are more I am forgetting (I still have brain fog and memory issues, but I'm ok with that). My GI doctor recommend the low FODMAP diet and I think that help reset my system too. I only did it strictly for a couple of weeks, so that wasn't too bad at all. I was also pretty stressed out about my diagnosis at that time, so that didn't help my gut either. I wish I had a specific answer for you, but it could have been anything that caused it and maybe was just part of my healing process. I actually thought about not writing that my blip it lasted 2 months because I didn't want to discourage you. For the record I am a generally a very slow healer, so hopefully your blip will be over really quickly .

Hi icelandgirl,

I'm still pretty new to this too, and I had a bad "blip" at 3 1/2 months that lasted about 2 months. It was sooo frustrating and I was pretty upset about it. Then one Sunday morning I woke up and miraculously felt better and now at 7 months, I am still feeling pretty darn good. The vets here told me similar things they are telling you, and it helped so much to know this is normal for some people and that relief is in sight.

I do know that some of the foods I was eating were causing me problems at that time, so that is definitely something to watch for, but the good news is I can eat most of those foods now in moderation.

I hope you feel better soon

Hi luvrdeo,

I'm glad to hear your blood test came back fine, but sorry to hear your endoscopy didn't turn out as well.

I just wanted to mention that I tried the low FODMAP diet for a couple of weeks after my GI Dr. suggested it and it really helped my system to calm down. I think my symptoms are different from yours, but I was struggling to feel better and it made a difference for me. I would guess that you would know if it helps you within a couple of weeks on the diet. I really hope you feel better soon.

Hi  ,  yes  that's  the  best  bread maker  in my  book..... I've  had  mine  for  years  & it is still  working.... many of the  less  expensive  brands  don't  hold up to the  gluten-free   dough  & the motor  burns  out.  So I  figured I'd  buy the Zo  &  not  need to  worry.....you  get  what  you pay for.....There are  at  least  two  newer  models  than  mine ... I like  the one  that  makes  the  regular loaf of  bread......

I love  to bake  & cook  but  for many  they  hate  it..... it is  time  consuming &  one  needs  lots  of  pre-planning  with the  gluten-free  lifestyle to keep  everything  moving  as planned... But the  rewards  are  terrific...

hth

Thanks Mamaw!

I will be purchasing one of these soon. It sound like they are worth it in the long run. I don't hate to bake and cook, but honestly never have much. It could be a nice hobby to take up now that I am over 40 and life is slowing down a bit.

According to my GI, sometimes people with Celiac will have nodules. These are not the big nobs that the word brings to mind but more like a bumpy surface on the intestine. They are just big enough that they can sometimes be seen, but not often. He said most people who have celiac disease will have nothing unusual looking when they take the biopsies.

Very interesting! He did use the term "bumpy" and broken up like a cobbled brick road. I wonder if it means anything when they can see this. I could clearly see it in the picture. Maybe this is why I had a bit of a rough first 6 months??