Jump to content
  • Sign Up
0
TTNOGluten

Completely Panicking

Rate this topic

Recommended Posts

well now I am completely panicking, after being back from Mayo clinic for two weeks, with a confirmed diagnosis for celaic disease after they biopsied me, reviewed my previous biopsy and completed additional deamidated gliadin enzymes and TTG Iga, they told me to go home and be as religious with my diet as I can, which I have. I have not felt much better over this past few weeks in regards to the cramps. At the time of my diagnosis, all additional studies looked normal including review of outside cat scan, and repeat cat scan enterography of my abdomen and pelvis. The doctor called today with a f/u to check on things, and after telling him that I am still having cramps for these past two weeks, he tells me that I should be feeling much better after 2-3 weeks, and I will likely need to come back out out to Mayo for additional biospies to exclude Lymphoma, even though when we met he told me everything looked fine with blood work, cat scans etc. which revealed no evidence of Lymphoma. Talk about panic!! Scared out of my mind now. I guess what other choice do I have, if it is not better after 3 weeks, then I head back out for more tests, needless to say my anxiety is at an all time high, hard to function, looking for any sort of advice

Share this post


Link to post
Share on other sites

Don't panic, really it is good they are running the test as a precautionary measure. I had so many tests ran. One that blew me away was diabetes but that is something that could be possible with celiacs. Good thing is you have the diagnosis and you move fwd from here.

Are you also avoiding dairy right now too? That's a thought on why you might be having continued issues.

Share this post


Link to post
Share on other sites

Depending on the amount of damage seen on your biopsy, you may indeed not feel better yet. It took years for your villi to become damaged and will take awhile for them to heal. Some people on here reported that they actually felt worse for awhile before feeling better. It still is very soon. I would give it some more time and reevaluate. Have you noticed any improvements with anything since going gluten free? Have you eliminated any potential sources of cross contamination from your home? Are you still consuming dairy? Cross contamination could be keeping you feeling unwell. Also the villi in the small intestine produce lactase so your body can break down lactose in dairy. When they are damaged they are not functioning as they should and you could possiblly be reacting to lactose. Try removing it too for awhile to see if that helps. As the villi heal, later on, it may be possible to add dairy back in. I had villi blunting(probably marsh 3) and I never had a problem with lactose/dairy. I did eliminate it for several months(for other reasons) and noticed no difference. I don't drink a lot of milk now but that is because I got out of the habbit. I eat all other dairy just fine.

  • Upvote 2

Share this post


Link to post
Share on other sites

Whoa! Don't panic.

Some people take longer than others and some go through a nasty detox.

If you aren't already, keep it to whole, unprocessed foods. Yes, it's a pain but you can add the others back soon.

Try ditching milk (a bit of butter probably won't hurt). No gluten-free baked goods. Take it easy on beans.

Have you tried probiotics and digestive enzymes? They can help get you GI system back on track.

Did they test you for vitamin deficiencies? If you have them, they can cause recovery issues.

Can you exercise at all? Short walks?

Clean out your house - no gluten. Tell everyone else to eat it somewhere else. No kissing gluteny kids or sweeties. Tell them to wash up! Toss out scratched gluteny kitchen items - cutting boards, colanders, wooden spoons. Perhaps plastic utensils.

It's hard in the beginning. At 2-3 weeks you are still making newbie mistakes.

Be grateful you have a doc that isn't ignoring you; although I'd freak out, also if mine told me she wanted to test me for lymphoma. Just breathe. Your doc is being cautious.

Share this post


Link to post
Share on other sites

I am taking out the lactose, he told 3-4 days and see how I feel without it. I guess I was blown away by the fact that two weeks ago, he told me everything looked fine, with no other abnormalities, inlcuding labs for Vit. D, iron, thyroid, cbc etc inclduing a dedicated cat scan looking for lymphoma interpreted as normal, and now it is liked everything has changed, and he states within 2-3 weeks it should be substantially better, yet looking through many blogs and accounts of what others went through it sure seems like it can take much longer than that. I don't want to overlook something, but at the same time I am astonished by the comments he threw at me today. I am getting rid of everything in my house tonight, and replacing everything conceivable, and will avoid even processed "gluten free foods", I guess you just can't tell.

I really do appreciate all of your support, and words of encouragement. Don't think I have ever been this scared though

Share this post


Link to post
Share on other sites

Btw, it isn't usually lactose - it's usually casein.

So when you buy food, avoid casein and lactose if you are really trying to go milk free.

Lactose is sugar, casein is protein.

Share this post


Link to post
Share on other sites

Do you have pets? Some people react to the gluten in pet food. I chose to put my cat and dog on a grain free petfood just to be safe. Knowing what I know now about the benefits of a grain free petfood, I would choose to feed it regardless of me having celiac. My dog and cat are doing so much better on it.

Share this post


Link to post
Share on other sites

SO sorry you have to go through this!!! I am 6 weeks out on gluten free diet.. but it took me 4 weeks for my bowel/belly stuff to feel better... I was still having up to 10 bowel movements a day, cramps etc for most of that first 4 weeks.. I was also avoiding dairy.. I realized the first week going gluten free when I was trying to eat calories by eating a big thing of ice cream - two nights in a row, that it was not sitting well with me! Cutting out dairy and gluten has made a big difference, but it did take some time.. Good luck, I'm sure it will all be just fine, and as others have said,

It does just take time- the dr's might not understand that as much as people who have actually been through it! :) They also don't understand how a few words can send us into total panic (been there recently!!)

Share this post


Link to post
Share on other sites

I take it this guy who told you this 2 week miracle gluten-free gut cure has never had celiac or gluten intolerance <_<

And I also would take it since you're a guy you are letting others prepare your food, and you're in a mixed household. (I just read thru several back posts). Certainly there must be a health food store somewhere within driving distance, if you expand what you mean by "driving distance." You will need to find out what the cross contamination culprits are, and what else on the gluten free menu of substitutes does not agree with your system. And perhaps send the other food preparing family member in to here to read about how to avoid cross contaminating the spouses (most of the time they had no idea, they're only human. My spouse both cooks and shops, this is a mixed blessing as I have to still check labels because he won't consistently.)

As others have suggested, it would be a good idea to ditch the dairy, surprised that the geniuses at Mayonnaise Mimic didn't tell you this, you may be able to re- introduce some lactose free later. The part of you internally that is damaged is the part that does dairy processing.

Other common things to try to take out are soy, in the form of soy flour. I don't know why any alleged gluten free manufacturer uses soy flour at this point other than it is cheap, and they are just going for the faddish market instead of the medically necessary one. It's almost all GMO, and that lobby has all the media brainwashed that it's harmless, inspite of the thousands of celiac people who discover they can't eat it. You may now be going OMG this means no mayonnaise because of soy oil, but there ARE gluten free mayonnaises made of other oils, such as canola. You may also be wanting to make sure any soups or broths don't have it.

And speaking of condiments, I hope you have your own set that nobody is dipping a knife or spoon into. Your best friend is a sharpie pen to mark items prominently. You may also want to get some rubber bands and put a rubber band around the package to reinforce this visually. You also should mark your own cutting boards, colander, etc. Don't use anybody else's teflon frypans or bakeware, tupperware, or cast iron. Get some cheap glass/ceramic bowls and put plastic wrap or a clean saucer over them, for storing leftovers, if you want to be sure.

If you are purchasing meat, I would be very cautious and perhaps avoiding things like cheap hamburger and frozen chicken breasts from Wally World unless you are positive that they are gluten free. AVOID NATURAL FLAVORINGS and MODIFIED STARCHES unless the manufacturer is willing to state the product is gluten free. And only add in one new product at a time. THIS is where spending a bit of money elsewhere to ensure your safety is going to save you money long term. I was recently reacting consistently to a name brand lunch meat that is marked gluten free on the package, this has really been a major, major annoyance as it was a lunch staple. I am not a super- super sensitive (yet) and can still eat out at restaurants and eat some dairy, but every time I had this turkey breast product, my feet were swelling up and I was retaining fluid big time. I think something likely changed with the manufacturer.

If you get really motivated, you can go grain free for a while, I did this for several years (except for a very little rice a few times a week) until we had a nearly week long power outage several years back, and I decided to try to convert to eating more types of foods so I could get along on pre manufactured products and fruit/veg if I had to, so eventually I could tolerate things like rice cakes with peanut butter (as soon as I found a peanut butter that worked, as the supposedly gluten free one was actually cross contaminated big time with something else via "shared facility" <_<:angry: ) Yes, I can make myself eat anything at any time of day, I would rather eat an apple and a piece of fish for breakfast, than to have the rest of the day be screwed up. If I eat a fruit and a vegetable at every meal, it is just a matter of adding in some form of safe protein and fat and then the grain items can become supplementary instead of primary.

Oh, and with beans, if canned, read the labels, and then rinse them very well to remove the hard to digest starches. With dried, pick over them and rinse them really well, then put boiling water on them, let cool, rinse again, then put in water to cook.

And if you're wondering what grain free people eat, some of us get a blender and grind a lot of almonds for flour meal. I can also make pancakes and flatbreads out of seed flour, bean flour, and potato starch, cooked in olive oil, that even normal people will find quite exotic and tasty.

Share this post


Link to post
Share on other sites

Takala,

thanks for all the helpful hints, one thing that I am trying to be is proactive about this as I do not like it running my life, indeed I agree with you that 2 weeks does seem odd that the Mayo doc through at me, not that I necessarily want to cont. to live with abdominal and back spasms everyday, and if there is anything else that can be done, I want to follow through. I was a bit miffed about there approach after having spent a fortune traveling out there, I was at least hoping they would offer me a dietician consult, possibly and allergy consult to assess for other food intolerances etc. also I have gallbladder polyps with this after meals and pain radiating into my back that is horrendous, but my daignosis of celiac, he quickly discounted any chance of this possibly being gallbladder related?? Not sure, seems I left with more unanswered questions than when I arrived. I am now buying meat at a butcher shop, amish chicken and fresh cuts only, avoiding lactose, avoiding processed foods the best I can, bought new kitchen ware, including storage dishes, changed out my toothbrush and handsoap, and called on prescriptions although virtually every pharma manafacture with say they don't add gluten but cannot guarantee that the raw products don't contain gluten, even Nexium and Zantac OTC. I see what everyone else has been through on this website and it is pretty amazing, the knowledge and insight that everyone brings to the table, sometimes a bit overwhelming.

I have the best family in the world, a great wife and two awesome kids, and damn I just want to feel better for them!!!

Share this post


Link to post
Share on other sites

What an idiot at Mayonnaise Mimic, yes, gallbladder disease and liver problems DO go with celiac and gluten intolerance. <_<:blink::angry::ph34r:

You'd be better off with a regular GP that could at least evaluate your gallbladder function, than going back there.

This may or may not resolve with the diet, depending on whether you have gallstones of good size blocking the ducts.

I was really surprised at how I regained my ability to eat some (good) fat, after I ditched the gluten. Well, of course, all the supposedly "healthy" low fat stuff is loaded with modified food starch, one of the most difficult products to digest in the universe. AVOID any sort of low fat, processed manufactured food made with modified food starch for now, if you're having gallbladder symptoms, it's evil, besides the USDA loophole that says it might not be correctly labeled as to true source.

Share this post


Link to post
Share on other sites

When I went to the doctor in the beginning for swollen feet they did a CAT scan and bloodwork. One day later they told me I had lymphoma.

I was sent to an oncologist - she told me what type of chemo I would be on, gave me website to get a wig because my hair was going to fall out,

and scheduled me for surgery (the lymph nodes that were very swollen were in my abdomen). I specifically asked this oncologist if they should run

a Celiac Panel because of the way my bloodwork was reading. No, she said, it is lymphoma. Needless to say my family was freaking out a bit.

I decided to get a second opinion from another oncologist, thinking I couldn't have it. He ran a Celiac test for me and it was positive. They still

performed the surgery to double check the nodes with a biopsy. I still swallowed a pill-camera to check for lymphoma or cancer anywhere. I still

had follow up CAT scans every month for a while to check the lymph nodes. After 6 months they decreased to a normal size. I gained back the weight

I had lost (from a size 2 to a size 6) but it took a while.

I said all that to say this: it takes a while for your body to heal and get back on track. The doctors thought for sure I had lymphoma - all the tests were

pointing that way. Even the biopsies were non-specific. But the gluten free diet has worked. For a while every freaking cramp would cause a bit of panic.

I still worry a bit that I am more likely to have lymphoma in the future, but those days are less and less the farther I get away from that awful time.

I feel your pain and know where you are. Your life revolves around tests and diagnosis. But dedicate your energy to learning and living gluten free and

I am sure you will heal. It takes time.

Take care,

Wendi

  • Upvote 1

Share this post


Link to post
Share on other sites

thanks for the support, scary stuff, sometimes I hate to even think about it too much especially with two little kids in the mix, the thought of being confronted with something more than this seems overwhelming at this point in my life. It's funny, I never figured I would be the type of guy to join a forum and blog about my health issues, somehow though hearing everyone else's story and their advice gives my some optimism for the future that my symptoms will eventually turn around, I guess I always wonder what is a normal time frame for this to get better, but I suppose everyone is different for sure. It sure makes you take inventory of your life and what is truly important.....

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×