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Half A**ed Diagnosis.. Not Sure If I Am Actually Celiac

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Hi all. I am in desperate need of a friend who understands this, hoping you can help. I find it so challenging to talk to my husband-friends-family because they have NO idea what I am really talking about.

 

In June ish of 2013 i was sick for about 2 months with diarrhea, weakness, 5 lb weight loss (which is a lot for my frame) and just the general inability to feel i was absorbing any nutrients from my food. I was also experiencing bad joint pain in my neck and shoulders that would never go away, just constant spasm. I explained to my doctor and she recommended a blood test for celiac and that even if the test is negative i should try a gluten free diet. 

 

The test was negative and i started the diet anyways. I felt GREAT finally didn't feel like a 90 yr old when I woke up in the morning. so i went 30 days without and had planned my challenge day for the local beer festival. I ate a big sandwich, drank a lot of beer etc.. and the next day i was fine! So i had a couple brownies at another party. The next night was brutal, i felt like i had the flu- full body aches, insomnia, vomiting, nausea, the works. I have since intentionally glutened once with a tiny bite of bread (about a month later) with much worse reaction and then never again on purpose though I have had a couple slip ups.

 

In January 2014 I requested a genetic test be done for celiac- and i won! I got it done and it came back with I think DQ 2 which is considered low risk. my doctor who has somewhat of a language barrier didn't really say i have celiac but didn't really say i didn't. she just said to stay on the diet. 

 

Just about a month ago I asked to see a dietitian and when i came in she asked when iw as diagnosed celiac.. I said.. I wasn't!? She turned the computer screen and showed me that BOOM right there on the screen it says "ongoing health conditions : Celiac Sprue: 

 

I talked breifly with my doctor and all she said again was your gene test came back low risk.

 

OK SORRY FOR ALL THAT BACK STORY! but now i am still having weird issues and i am kind of depressed about this whole not being able to eat anything, i have gotten sick twice from scrambled eggs at the hotel i am staying at even though they told me they are just eggs. (like bad weird greasy hard to flush stools- one instance that i almost pooped my pants at IKEA)

 

My husband says i need to get an official diagnosis to know whats going on, that maybe i am allergic to something else. or that there is something else entirely wrong.  I am pretty convinced that this is it based on my symptoms but who knows.

 

What would you do? I honest to god am terrified about doing a gluten challenge. I am a terrible mean monster and in so much pain.. i just don't think i can bear it. 

 

HELP!!

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In January 2014 I requested a genetic test be done for celiac- and i won! I got it done and it came back with I think DQ 2 which is considered low risk.

 

 

 

DQ 2 represents the highest risk factor for celiac, not low. DQ 8 is the other common risk factor, although not as high as DQ 2.

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With a DQ2 gene, you have the predisposition for developing full blown Celiac.  With what you have described, it sounds like that has already happened.  One thing I always say to people who don't have a definitive diagnosis is.....if you are that sick when you eat gluten and have the genetics for it......high risk genetics to boot......why would you do a challenge?  Could you request a biopsy?  Although the biopsy has a somewhat high rate of false negatives, you could use that as a tool to see what is going on in your gut right now.  It may not give you a diagnosis but if you are having problems, it could rule out other problems for you. 

 

If you do not or can not do a challenge (and I don't blame you one bit), just stay gluten free and be very strict about it.  I would also recommend taking digestive enzymes because it sounds like you are having problems with fats right now.  I did too....for a long time.  They will help you digest the food that you are having trouble with now because your gut is most likely not healed.  Also, dairy could be causing issues for you, as it does for so many of us.  Are you eating dairy?

 

There are many reasons why people with full blown Celiac test negative on the blood work and it doesn't mean you don't have Celiac.  But if you are doing a dietary trial, you have to be strict, even with cross contamination, or you will get sick.  You may want to read the Newbie 101 thread, which has great information on how to do the diet right.

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With a DQ2 gene, you have the predisposition for developing full blown Celiac.  With what you have described, it sounds like that has already happened.  One thing I always say to people who don't have a definitive diagnosis is.....if you are that sick when you eat gluten and have the genetics for it......high risk genetics to boot......why would you do a challenge?  Could you request a biopsy?  Although the biopsy has a somewhat high rate of false negatives, you could use that as a tool to see what is going on in your gut right now.  It may not give you a diagnosis but if you are having problems, it could rule out other problems for you. 

 

If you do not or can not do a challenge (and I don't blame you one bit), just stay gluten free and be very strict about it.  I would also recommend taking digestive enzymes because it sounds like you are having problems with fats right now.  I did too....for a long time.  They will help you digest the food that you are having trouble with now because your gut is most likely not healed.  Also, dairy could be causing issues for you, as it does for so many of us.  Are you eating dairy?

 

There are many reasons why people with full blown Celiac test negative on the blood work and it doesn't mean you don't have Celiac.  But if you are doing a dietary trial, you have to be strict, even with cross contamination, or you will get sick.  You may want to read the Newbie 101 thread, which has great information on how to do the diet right.

 

 

Thank you Gemini. From Ninja's post (and this is concurrent with the findings on the gene test that i looked at) it showed DQ2.2

 

HLA-DQA1 *0201 + HLA-DQB1 *0202 = HLA-DQ2.2. This haplotype occurs in lower frequencies across the world and is also less common in celiacs. It is thought to confer a potentially 'lower disease risk'. It is important to note that low risk does not equal no risk: this haplotype can mediate celiac disease by itself. Sometimes the A1 or B1 portion of DQ2.2 combines with the A1 or B1 portion of DQ2.5 which confers a marginally higher risk than DQ2.2 alone.

 

But anyways. Yes I am eating dairy as it hasn't seemed to cause me any issues. For the most part I am feeling pretty great (until about 4 months ago when i poisoned myself slowly with taco seasoning once a week for 8 weeks that was THE WORST-took me 4 weeks to recover) I I try to be pretty strict and its SO easy when i just cook for myself. 

 

When I go out to eat though I still order french fries that are themselves gluten free and I order a burger protein style but I don't ask people to clean the grill off for me. I don't get too into the cross contamination because so far it doesn't seem to bother me- at least that i KNOW of. Which is starting to worry me some since I know a small amount can cause intestinal damage but not cause symptoms. I am extra stressed at the moment because i am out of my home living in a hotel (residence inn that offers free breakfast and food on eht weeknights as well) the kitchen is VERY small and i am too lazy and out of my element to make the kitchen work. But the 2 times i ate the scrambled eggs later that day i had URGENT bathroom needs!! I couldn't understand unless like someone mentioned they put heavy whipping cream in the eggs to maintain shape. or I am being CC'd.maybe the high fat content is causing issues?! though before i have made whipped cream and other deserts (gluten-free) with heavy whipping cream that caused no issues. its mostly the characteristcs of the BM that worry me the most. it seems like Steatorrhea (according to the internet) I dont usually experience this. Funny how glutening symptoms change in just a year.

 

My struggle also is with my husband. He is supportive as much as he can be-but its hard because he doesn't know much about it. Even though I have asked him to research. He thinks "why be so careful if you don't even know if you have celiac?" The way I feel .. I want to go hardcore strict no gluten, but the isolation is depressing.  I got a salad from the hotel the other night with (assumed safe) balsamic dressing, i get back to my room have one bite, chew then freak out and spit it out, rinse my mouth and throw it away. My carefree life style is gone. and I am afraid it will change who i am.

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The gene testing is not proof you have Celiac.  Your positive response to the diet, suggests it is a possibility.  What tests were actually run though--if you did not see a Celiac specialist, they may not have run the proper tests, thus the confusing diagnosis.  It's also possible to be sensitive to gluten without having Celiac.  The only way to know for sure is to start eating gluten again for 8 weeks and have the tests re-run.  If you don't want to do that, then just continue with the gluten-free foods and feel good.

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I know that the gene test isn't proof I have celiac. What confuses me is that my doctor put that i have Celiac in my file anyways. That makes me wonder if i do actually have it and worries me that i should be more careful with possible cross contamination issues and long term damage. Especially considering we are trying to procreate right now as well..

 

I guess I can call her and ask for a specialist but i don't know what else to do. And a gluten challenge makes me want to vomit and s$#& my pants just thinking about it. Because that's likely what will happen.

 

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The French fries themselves might be gluten free, but unless they are using dedicated fryers, you are getting glutened.  You might have only ordered eggs, but did they use proper precautions to make sure they were cooking in a clean area?  not using contaminated butter? 

 

One happens now is up to you.  You can either do the gluten challenge, which sounds like it would be hell for you.  Or you could just follow the gluten free diet and follow the previous doctor in stating you have celiac.  I would choose the latter if I were you..  If you aren't careful with cross contamination, it's doing harm to your intestines.  It can also be causing harm in the rest of your body also.  Do you just want to say **** it and throw caution to the wind and see what you feel like in a few years?  I can promise you this, if you are a celiac and don't start the diet and be very cautious of cross contamination, you will only get worse.  Some of it could even be irreversible.

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I agree with you. I have been gluten free ever since July 2013 aside from a few slip ups. I just have a very hard time feeling comfortable asking for all these things when i order food. Even when I do request gluten free things (not going as far as asking for a clean grill and such) how do i trust people!? 

 

How do any of you trust people to not sabotage you? How do you order sushi or chinese or mexican and actually trust that the person has ANY idea what the hell you are talking about? Let alone speak enough english to know what you are saying. I tell the hotel and they don't really seem to care. Most of the time its more hassle than its worth. I don't want to eat out ever anymore. 

I don't even want to go to weddings or back home for thanksgiving because what the hell will i eat? It's so much energy to hover over everything making sure they aren't using the wrong utensil and all this crap. I hate it!

 

and I know there is nothing i can do to change my predicament but its sure as hell frustrating. even my sister things you can just take drugs to make celiac better. sighhhh..... 

 

I would kill to just have one real friend that knew what this was like. The best I have is my really good friend with a peanut allergy, so at least she kind of understands but restaurants, hotels, airlines all know about that one.

 

sorry for the rant

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No need to be sorry for the rant, sometimes this is the most frustrating disease ever.

 

I don't make a habit of going out to eat, only been out twice in five months.  If you are going to go out to eat, I would do a lot of research first.  Call ahead to see if they can accommodate you. 

 

You are going to find a lot of people frustrating.  They just don't understand.  Some might learn and try to understand, but you are going to find more that don't than those that do.

 

I am going to go to a wedding in a week for my boyfriend's cousin.  I called him and asked if his caterer could do gluten free.  I told him if not, no big deal.  I would rather be safe than sorry.  I am going to eat a light meal before we go, just in case.

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I agree with you. I have been gluten free ever since July 2013 aside from a few slip ups. I just have a very hard time feeling comfortable asking for all these things when i order food. Even when I do request gluten free things (not going as far as asking for a clean grill and such) how do i trust people!? 

 

How do any of you trust people to not sabotage you? How do you order sushi or chinese or mexican and actually trust that the person has ANY idea what the hell you are talking about? Let alone speak enough english to know what you are saying. I tell the hotel and they don't really seem to care. Most of the time its more hassle than its worth. I don't want to eat out ever anymore. 

I don't even want to go to weddings or back home for thanksgiving because what the hell will i eat? It's so much energy to hover over everything making sure they aren't using the wrong utensil and all this crap. I hate it!

 

and I know there is nothing i can do to change my predicament but its sure as hell frustrating. even my sister things you can just take drugs to make celiac better. sighhhh..... 

 

I would kill to just have one real friend that knew what this was like. The best I have is my really good friend with a peanut allergy, so at least she kind of understands but restaurants, hotels, airlines all know about that one.

 

sorry for the rant

 

You don't trust people I guess.  I would not eat in a restaurant where people may not speak English or where there is so much possibility of cross contamination.  It's just easier to not eat out unless I know they know how to be gluten-free.  As for peanut allergies, yes, some restaurants know about that but they don't know all of the things that have hidden peanuts or other nuts usually.  

 

Do you have online access to your test results?  Did you get actual numbers?  What exactly did it say in your chart?

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I have my gene test somewhere, its prometheus and i remember it was the last bar of the graph 2.2 considered the low risk gene. 

My blood test last summer says: Tissue transglutaminase igG standard range <=.90 index, my range is .10 and for IgA with the same standard range is at .15

My online healthcare login there is a place called "ongoing health conditions" and under that it says "Celiac disease noted 1/3/2014" and then there is another one that says "cervical spine degeneration noted 6/13/2014"

 

I guess its not so much that i don't trust people its just that if i am going to be THAT careful i feel like i can't rely on restaurant people to take care of me. Maybe i am just going through a thing right now. But i really hate being "that person" at a restaurant who is a pain in the ass. I have worked food service and know what its like. I do trust my good friend (with peanut allergy) to cook for me and sometimes my neighbor- though she usually gets me with the damn soy sauce.

 

It feels that with all this planning of restaurants and having only a couple that you can go to seems so limiting and how am i to impose this life of limited options on my husband as well?! How is one to be spontaneous and go to a quick lunch, or out for drinks and get some dinner. I suppose I should just buy stock in Kind bars as that's something i always keep in my purse haha!

 

I also really am excited to have a child because it seems parents can get away with taking a variety of snacks anywhere! I will be all set then :) bring my cheese cubes and veggies and hummus to bars and restaurants hahaha

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I don't mean any of what I'm to say to be mean, so please don't take it that way.

 

For one, you aren't "imposing a life of limited options for your husband".  This is a new way of life for you, the ONLY way of life for you.  I don't have a shared household, my daughter and I are both celiacs,  so I can't give you much advise as to that one, but my boyfriend does eat gluten outside of the house.  There will be no more "spontaneous" dinner/lunch/drinks.  It sucks, but that's life.  Would you rather have spontaneity or not feel like s$#&?  Either your husband is going to be understanding or he isn't. For your sake, I hope he is. Family is always going to be a hard one.  Some are really going to think you're going way overboard on how careful you have to be, some might think you're down right insane.  Don't let it bother you.  You can talk until you're blue in the face, but if they don't want to understand, nothing you say will make a difference.  I've had to be down right rude to some of my family members, but I also have told them that I think they are rude by telling me " I am being too anal, a little won't hurt".  My response " just like a little peanut won't hurt someone with a peanut allergy".  I might not die, but that doesn't mean it isn't doing damage.

 

You can't rely on anyone else but YOURSELF to keep you safe.  I have very few people I allow to cook for me.  My boyfriend's parents and mine.  My best friend has listened to me so much, I'm sure she would have a gluten free food ingredient wise, but there is so much to remember about cc, I can't trust her.  She's never offended, she's seen me at my worst. If you're worried what people will think, don't.  They aren't the ones that have to go through what you go through if you ingest gluten.  How would they like going through every day like they have food poisoning?  You have to stop worrying so much about what other people think and take your new life by the horns.  Look out for you and only you.

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Look at it this way - lot's of people have much worse diseases in that they need medication or surgery and even then they might not get better. Some folks (like your friend) have peanut allergies and can't even walk into a place that serves something with peanuts. Some have such severe asthma that they can't risk going anyplace where some woman dumped a perfume bottle over her head, because it could kill them.

 

We have restrictions, but not as bad as some folks do. We adjust. Yeah, we lose some sponteneity, but planning ahead keeps us healthy enough to enjoy all of the other good things in life. I hardly ever eat in restaurants, but I still go to them to socialize with my friends. I eat before I go and just have coffee. I still go to Thanksgiving dinner at a friend's house. She has offered to cook me special food, but it's easier if I just bring my own. She doesn't mind. I can't grab a to go lunch on the way to work but I cook in large batches and freeze individual servings so I just pull my lunch out of the freezer every morning.

 

You will adjust, just like the rest of us have. There will even come a time when you're NOT thinking about your diet every minute of every day! I promise! :lol: (I say that from experience. The first year it was on my mind CONSTANTLY.)

 

The biggest problem I see for you is getting your husband onboard. He needs to hear from your doctor maybe, so he'll know to take it seriously. If he doesn't want to research it, maybe you should drop some paperwork in his lap that explains how strict we have to be with our diets.

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Thanks for the tough love guys. The stupid thing is that I know all this stuff, i guess maybe just the living in a hotel thing is getting to me because its allowed me to be around so much more gluten food. (there is a leak in my kitchen so i have no running water and no kitchen!!) Usually i am fairly confident because i love to cook and eating gluten isn't an issue usually-when i have my big beautiful kitchen of course.

 

And the weird thing with the eggs i guess is a mystery but i dont necessarily need the answer i need to just cook my own food. (i know i am not allergic to eggs because i eat them all the time and never have issues)

 

I have found my fair share of lovely gluten free options-my work is right across the parking lot from trader joes (MY LOVE!) so i eat a lot of salads for lunch from there or just bring leftovers.

 

My husband is supportive i think he is just confused. He wants me to feel better and he has a conventional medicine mindset. He has no idea how much research i have done in the last year. I guess I need some good scientific documents on cross contamination so he can read them. I suppose i just want to heal more and get better. I want to try the enzymes and stuff. I don't know if its a bad thing to assume i have an auto-immune disease without actually having one.. but whats the difference i guess? If a licensed professional notes that I do i suppose I just go with that and be glad i didn't have to get a biopsy.

 

sigh.... at least i can still drink my wine ;)

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Maybe you might want to look into get a few small things you can cook with in your room.  Is there a mini fridge?  I know they sell smaller skillets and grills, so maybe that will be an option. Bring your toaster from home. Just an Idea.

 

It isn't bad to "assume" you have an autoimmune disease, you have one.  If you feel better on the gluten free diet than you ever did eating gluten..... you get what I'm saying?  You're a celiac, welcome to the club,  Be glad you have a diagnosis, some in your shoes would still be searching.

 

Maybe you and your husband should sit and research together.  Let him read stuff on here.   A bunch of diagnosed celiacs being as anal as you need to be.  He might get it then.

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My husband travels. When he wants to eat (he always carries food with him or hits a grocery store when he arrives) at a hotel buffet, he talks to the employees. He asks to see the boxes and asks if he can have the first serving. One chef told him not to eat the scrambled eggs as the manufacturer add fillers to them and cross contamination is an issue on his large grille let alone from other hotel guests (he is just one guy putting that food out and most of it is pre-cooked). The hotel guy offered to make scrambled eggs, but in a clean pan with butter. If an employee gives my husband the "deer in the headlights" look, he goes back to his room to eat his own food after grabbing a yogurt and a piece of uncut fruit.

During our recent Baltic. Sea cruise, the head waiters asked us to order our scrambled eggs fresh and remind them each and every time that we needed to be gluten free. They also buy scrambled eggs ready to pour from the carton. I guess it is common to add fillers. By the end of our cruise, they knew us well and we tipped accordingly!

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I have 8 weeks of hotel continual hotel stays coming up---I hear you about trying to be gluten-free in a hotel.  I was able to find an extended stay place for one week...still working on the rest of the time but the town I'll be in is all of 4000 people...

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My family gave me extreme grief at first.  I felt like they would choose gluten over me.  They didn't believe I had a serious problem. I felt so alone.  We stuck it out and they watched me and now (2 years gluten free) they have seen enough to believe me.  By seen a lot I mean they saw my eye twitching, body swelling, and spent one painful evening in a hotel room as I sat in the bathroom noisily.  On a couple of occasions recently they were more cautious for me than even I thought of.

 

My husband was very sick of hearing my health issues.  I tried to squelch it, but I just could not altogether do so.  He was my husband and my strength had gone.  I kept talking as I needed.  I showed him the surprise rashes, one leg bigger than the other, and bloated belly when some sort of mistake was made.  He came to see that I told him what really did happen. The "All in your Head" changed to amazement.   Illness isn't just hard for the one that is sick.  I recall my mother telling me that she could not feel my pain; she was right.  As a mother sometimes I don't know if a child really hurts or not, but always with time, I can discern, because a child that isn't really sick wants to turn handsprings in the living-room.  I would suggest that you take the time you need to rest and get better.  Next give your husband time to watch and see what happens.  I won't be surprised if one day he enters into the battle willingly because he gets it!  You may feel belittled or lazy for a while, but you can begin to heal anyway.  I found friends on the forum and that no matter what problem I expressed someone would get it.  Eventually, you will likely hear of others with celiac around you.  My Dad saw Jennifer Exposito on TV and said, "Hey she has that disease Dee has but she (Jennifer Exposito) was really sick!

 

I could not do a gluten challenge.  What I have is a genetic test showing  2 copies of each of the common celiac genes,  Symptoms that changed with the diet.  A nutrient test showing many low nutrients  in spite of a wide variety of natural food in the diet.  Another nutrient test showing a rise in the nutrition levels 18 months after the first.  You and your husband need to decide if it is worth it and if it is needed.  IF you both are convinced that you can never have gluten again it would be a good start.

 

Dee

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I have been reading all your replies this evening and I can't explain how grateful I am. Thank you for taking the time to help me out.

I am in an extended stay hotel with normal size fridge and 2 burners. I actually cooked tonight some taco meat and feel better already. Just takes more planning, but it's overall a much healthier way to eat and I have always preferred eating healthy stuff because other things dont agree with me.

I will work on coming up with research to show my husband and such. I can't intentionally restart the inflammation process again, it's just too painful (for the gluten challenge).

Thank you for the support, I know now that I have you all to turn to in tough times. Like..thanksgiving haha!

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You'll do fine with it all because I see a sense of humor in there!  :)

 

Thanksgiving is easier than you think.  Delicious gluten free dressing is easy to make and so isn't gravy.  Those are really the big concerns with doing turkey dinner.  There are some fabulous cooks on here who give great advice!

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I actually did pretty good last Thanksgiving- I live in California but my family is all in Nebraska. So this last thanksgiving I stayed here and went to a friends family one where I knew of one other person who ate gluten free. I made gluten-free stuffing/dressing (though it got a little burnt when the host reheated it) gravy, rainbow mashed potatoes and the turkey was gluten-free so that was awesome. I also found a great recipe thats super easy for gluten-free pumpkin pie (crustless).  I guess what I am most concerned about is my family back in the midwest. My mom is super supportive and such but its the rest of the family and my husbands small town farm family that i will definitely have to bring  my own food.

 

But it will just be a trial and error. hopefully less errors. I made breakfast in the hotel room today not too shabby, a girl needs her bacon. 

 

So back to earlier when i was talking about not trusting people at restaurants and such. Do you all get pretty concerned about minor glutenings (who am i kidding they are rarely minor)? I guess there isn't really a whole lot you can do afterwards but hang on for the ride but, do you worry about the long term effects?

 

Which digestive enzymes do you take, if any?

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See what I mean? BAAAAAAACON! Yum!

I have been gluten-free for over 9 years so I don't have minor glutenings anymore. I do not eat out that much at all but have established places to go when I do eat out that always get it right. I am very sensitive so usually know when I have sustained a hit. When you are first healing, it may take longer to come back from a hit but once you are a veteran and have healed up pretty well, they still hit hard but the recovery is faster. That has been my experience. I do not worry about long term effects from these as they are so rare, it should not pose a problem. It would only be a worry if you were making mistakes on a continual basis.

I did use Digest Gold by Enzymedica and they work really well. However, they are not cheap so if you find a less expensive one, by all means, try that. Just make sure they are gluten free, of course! I do not need the enzymes anymore...another sign of healing. Take one with every larger or fatty meal you eat. That's it.......and your food should go through much easier with less after effects. It just gives you the added enzymes you may not be making enough of right now. I would recommend buying a small bottle to start to see if they agree with you and work.

Don't be concerned with family. Take some food and cook when you need to. Just tell them this is what you have to do so you will not get sick. This is the part that is harder than eating gluten free.....dealing with family members who don't get it.

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Well it's a little over a week now since I ate those scrambled eggs that went through me within 4 hours and I am definitely feeling off.

For the last 4 days I have had this headache that hurts when I move my eyes, tired, CRANKY, EMOTIONAL, more bathroom time, and my neck is bugging me again. Oh and off and on nausea for the last 2 days.

Why the heck do I have the sleeper cell symptoms? Other than the "urgent greasy evacuation" i didn't have much for symptoms until a couple days later. And now they will surely be stretched out another week. Just in time for my trip to MN....

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Unless it was something else I ate, it could be a million things at this point. But I have been pretty dang good and only eating approved gluten-free items (salads, five guys, yogurt). And I mean my own yogurt because this crap at the hotel has modified corn starch AND modified food starch. I'm supposed to avoid the food starch right? Ok I did eat one of them a few days ago. ..

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