taynichaf

I'm new here as well and we're just waiting for my son's biopsy and blood tests for the rest of the family. We're in Menasha. I've been looking for a support group or something that would help the kids with the transition. All I've seen are ones in Sheboygan or somewhere further away (can't remember where).

 

So, hello from Menasha!

Woahh... I live in Mensha!

Sounds like you have a problem with gluten!

I had a negative biopsy and I am still gluten intolerant.

I suggest you keep eating gluten until ALL testing is done. Not eating gluten could mess up test results. After you see the allergist, I think it would be good to see a regular doctor to have the full celiac panel blood testing done and out of the way! THEN you should be able to go gluten free

It sucks waiting... I was on and off gluten for 2 months because I kept deciding I needed more testing and all that stufff. It's so much easier to wait than to wonder the rest of your life!

Btw, some people have negative biopsies and positive blood tests.

Thanks for the replies! I was actually only gluten free for 4 days when i posted this :} Some symptoms are slowly improving though.. I just want this depression completely gone!... NOW! But i'm trying to be patient..

For me, it took a few weeks for some GI symptoms and migraines to improve. For other symptoms like fatigue, and pain.... well, I'm one year in and still waiting.  LOL

 

You'll probably need to give it until Xmas, or even longer, before all your symptoms clear up.

 

I went entirely dairy free in my second month gluten-free (I believe). Once I was gluten-free, it became much easier to notice how dairy gave me stomach aches so that made it simpler. Someone also mentioned how dairy can contribute to acne, and that was further incentive to drop it.  i just had icecream twice last week and I did not get a stomach ache from it (yeah!) but my skin is acting up again (boo!), so from this I am guessing that I am no longer lactose intolerant (after 1 year gluten-free) but my body doesn't lile something in the dairy so I get spots.  I'll stay mostly dairy free.

I noticed dairy gives me stomach aches too! I'm going to go dairy free for awhile starting now... ha.

Anyone!?!?

Biopsies show:

No evidence of Celiac disease. Continue Probiotics & increase fiber to 25gms daily.

Copy of path report.

Surgical procedure:

EGD with biopsies; colonoscopy with biopsies

Tissues:

A. Duodenum, NOS

B. Gastric antrum

C. gastro-esophageal junction

D. colon - random colon

Diagnosis

A. Biopsy Duodenum --

    --  Duodenal mucosa (19 fragments) without evidence of villous blunting or active inflammation

B. Biopsy Gastric Antrum --

    --  Antral mucosa without inflammation

    --  Negative for helicobacter pylori

C. Biopsy GE junction --

    --  gastric-type mucosa, no evidence of intestinal metaplasia

    --  Chronic inflammation, mild

D. Random colon biopsy --

    --  colonic mucosa, no evidence of lymphocytic or collagenous colitis

    --  no evidence of active inflammation

Continued...

Microscopic description:

A. Sections are of nineteens fragments of colonic mucosa shoing a villous architecture. An underlying lymphocytic and plasmacytic infiltrate is present. Active inflammation or villous blunting is not evident.

B. Sections are of the gastric antral mucosa are without inflammation. Special stains for helicobacter pylori are negative.

C. Sections of the GE junction consist of fragments of gastric-type mucosa with adjacent squamous mucosa. The gastric component does not show any intestinal metaplasia. Mild chronic inflammation is present.

D. Sections are of fragments of colonic mucosa in which the glandular pattern is uniform. There is a diffuse mild lymphocytic and plasmacytic infiltrate throughout the lamina propria. The trichrome stain does not show thickening of the basement membrane.

Note: All controls show appropriate reactivity.

Gross description:

A. Received in formalin labeled 'biopsy, duodenum count number of biopsies, rule out celiac disease' , the specimen consists of nineteen tissue fragments, 0.3-0.4 cm. The entire specimen is submitted in cassette A.

B. Recieved in formalin labeled 'biopsy, gastric antrum' ,the specimen consists of two pale pink tissues, 0.2 and 0.7 cm, submitted in cassette B.

C. Received in formalin labeled 'biopsy, GE junction' , the specimen consists of three white tissue fragments, 0.2-0.4 cm, submitted in cassette C.

D. Received in formalin labeled 'random colon biopsy' , the speciment consists of ten white tissue fragments, 0.2-0.5 cm, submitted in cassette D. 

----------------------

For whoever reads through all this, thank you!! I underlined the descriptions that show something that seems abnormal, and I dont understand what it means.

I was diagnosed with GERD, but I didn't that my reflux was THAT bad... I found the gluten free diet helps my reflux though! But still have to avoid chocolate :/

My test came back negative , I was shocked to find this out!! I really cannot believe it! So I have decided to just go Gluten Free!! I know I have gone Gluten free for 3 days and OMG the difference was amazing!! I know it seems odd that 3 days would make me feel so wonderful but it did!! So I decided that if my test came back negative I'd go gluten free, I don't need the Dr. To tell me to go gluten-free , I need me to take care of myself! Thats all!! Just take care of myself!! It just makes sense to me!! I used to do the Atkins diet, was told it wasn't good for me!! I quit a few years ago , and lo and behold I started having problems. Now mind you I don't have some of the problems alot of you have but I have problems! And the more I thought about it! The more it dawned on me! I was eating meat and fresh fruits and veggies and Atkins! Bingo!! SO back I go eating the way I did before!! I'd like to thank this forum for helping me!! I know I am new and have to have every thing I say approved my a mod. But just reading everything you all have to say is a great help!! It sure made me think!! And now I have an answer!! TY so very much!! 

My tests were all negative too! And I could see a huge difference in myself within days as well Good luck on the diet!!

how did you know to go casein free?? Is that just lactose?

I'll just post the whole thing

I've only been gluten for about a week now...but ask the other times I tried going gluten free I would feel starving and very sleepy...now I'm still just my normal exhausted self..my arm is like limp just from holding some clothes.. How long did it take you to feel better?

Yupp it's im GERD.. ha

Everything on it says it's normal except this one thing...

For : Biopsy GE Junction it says 

-gastric-type mucosa, no evidence of intestinal metaplasia

-chronic inflammation, mild

So where do I have chronic inflamation?? Is that just my GERD diagnoses?? Or my hiatal hernia??

btw, my doctors talk about it as if GERD and a hiatal hernia are the same thing...I'm confused!

Thanks.

Awesome, thanks!

Ohh, and I also heard that I can't eat certain fruits... Do you have problems with any?

You don't get rid of it. You live with it.

 

I tried the medications for it and found it was making it worse.

 

As of right now i follow these guidelines:

 

No greasy

No spicy

No rich

No chocolate

No caffine

 

In addition to this i try to eat something starchy every meal. I also eat smaller meals more frequently.

 

I sleep on an incline pillow instead of laying flat, as it makes it worse.

 

As for the hernia, i've heard they can be fixed, though i don't know how.

Okay thanks! I think the only thing I eat out of those is chocolate...my favorite! but i cant live without it ha. Are greasy foods just like french fries and stuff?... sorry, stupid question ha.

I dont like taking medications, so I never started... even though im not even sure what to take.

Is your pillow called a bed wedge?

Ok, thank you!

I just don't get it! Avoid certain foods?.. Is that it? Is there any way to get rid of it? I have a tough time figuring out what foods cause my GERD, because i've had it for so long...I guess.

I also have a hiatal hernia... Is that fixable? What am I supposed to do about that??

I've been googling these things and reading about them... but I think it would make more sense for me to hear it from you guys.

Thanks

And don't forget to clean your bathroom!

( maybe I should aim that comment about 6 foot high at my house?)

If you have all your Celiac lab work reports....post what you have. Give the "ref. ranges" and the answers. If it looks completely odd, message me. Maybe I can help you figure out what to post. If we need to, you can cover your name, address, hospital, etc and scan them and email them to me. Then I can explain what the ranges are or tell you the stupid doc didn't give you what you thought you had! Cause.....that never happens ( said sarcastically).

I just got more blood work friday... So I should get the results by this coming friday, and then i'll post! The doctor also did other tests. She did one to check for iron deficiency anemia... So if that says im anemic again, I think I can tie that back to eating gluten again(last time I got tested ai was gluten light/free for awhile and it came back borderline, but normal) But I will deffinatly talk through it all with you, thanks.

And maybe a few loads of laundry and clean your bathroom?

Hahahahahhaha! I actually do need to do my laundry... bad! Ha, i'll do that too:)

I feel like Im on the fence...Cause if don't do it today, I know I can't wait until Monday. I know I sound a bit dumb, like I'm waiting for someone to respond to tell me what to do...but I think I was waiting for someone to respond with advice that would enable me to make up my mind. After speaking with a friend, I think Im just going to pass. I guess Im going to self diagnose. As many of you have said on here, we know our body's best. Sometimes we are our own best health care. If anyone asks, and needs the definition of how bad I react, Im just going to tell them I have Celiac.   Im technically not lying, as it's never been proved that I don't have it. My reaction to gluten is just as severe, as someone that's been a confirmed Celiac. And I know I'll get the respect that I deserve. As I mentioned on another post, I can't doubt myself...the more confidence I have in what's right for me, I think the more respect I'll get from others. And even if I don't, they aren't the ones dealing with the consequences.

 

Now there's that back bone that I was looking for!

Good plan

If your still unsure about self diagnosing yourself with celiac, Im sure after time on a gluten free diet, you will realize how serious your symptoms were.... BUT I think celiac can cause big problems with getting pregnant... So if you are not getting an official diagnoses be VERY strict about it all... Gluten free lotions, shampoos, cosmetics, dishes, everything like that.

Good luck!

 Hello,

        I have been struggling with IBS for 3 years now.  I have talked to doctors about it, but they look at me crazy and tell me to reduce my dairy intake.  Now, I'm trying to find out what is causing the IBS myself; I have decided to take a food allergy IgG test. I used to eat a lot of wheat products: Whole wheat toast for breakfast; then a turkey sandwich for lunch; and a wheat roll with dinner. I ate a lot of pasta. For the past few months my diet has been gluten light. I gave up coffee, soy, dairy, and wheat for 7 days last week and felt so much better; but I would like to know specifically what foods I'm sensitive to before eliminating multiple food groups.   I have never been gluten or wheat free (longer than 7 days), so is it necessary that I do a gluten challenge for 3 months? How long should I eat gluten heavy before getting an IgG test?

I dont think that you need to do a gluten challenge for 3 months.. I'm GUESSING maybe a month, since youve only been gluten free for one week. I think it is important to test, just so you can get an idea of why gluten is effecting you.

If you don't want to get tested, there is a minth long diet called the whole 30. It eliminates certain foods for a week or so, then reintroduces them. I have never done this diet, but I think it would be very effective at targeting the foods that bother you.

<3

Ok, Hon. I'm going to work with you like you are one of my boys and help you get it together, OK?

I have to do something now but ...I think you need a plan of action. A few things to work on. I would suggest the first thing to do would be get copies of any lab tests in the last year or maybe two. Get copies of any procedures, X-rays, ct scans, etc. Get the pathology report and the procedure report from your endoscopy. Put it all in a binder or a big envelope. Something to keep them safe.

When you get them, you can post what labs for Celiac you had and the pathology report. Then you can get some suggestions of where to go from there.

How does that sound? It's the weekend, so you have 2 days to relax and make some plans.

Sounds perfect, thank you so much!

I'll make that my homework next week to call and get all my tests.. because I have had A LOT of stuff done in the last year lol. But I will start with that. Thanks again.

thanks for setting me straight, kareng 

 

taynichaf,

 

i'm sorry to hear you're stressed out, and I hope things improve!  at this point since you were unable to get the DGP test, be proactive, and remove ALL gluten.  you are in charge of your own health, and I hope that your family comes around to support you.  if you take it seriously most likely others will.  

 

ps-I have not personally tried this remedy myself, and the internet is a blessing and a curse, but when I was researching hiatal hernia after my diagnosis, i came across this natural remedy.  

Open Original Shared Link

 

research your diagnoses, and if after doing your research you still don't understand, then ask questions.  you've got to do your part 

 

if you aren't in charge of your health no one else will be.  get a copy of all tests, and put them into a binder.  be proactive, and good luck with the gluten-free diet!

Thank you for the link... I am going to do my research on all this now since I realize its more serious than I thought.

Now, I plan on being gluten free... I don't think I'll be able to be as strict as everyone says because it will just start arguments with my mom :/ So, I'm just going to start by eating gluten free, then hopefully my shampoos and eveyrthing will run out soon, that way I can go with my mom and buy new ones that I know are gluten free... Once I move out, I WILL be very strict though.

I have copies of my tests in a folder actually I'm hoping that once my mom sees changes in me with eating gluten free she'll start to believe me.. But I don't know with her.. Shes the least supportive person I know and it SUCKS to have your mom be that wayyy..

Ohh, the only test I am missing so far is my egd that was just done, but they actually are supposed to just mail me the results... Do you think that they will not send eveything you guys are saying I need?

Thanks

I'm not trying to stress you. I think my son is about your age. He is 20. He was pretty sick this year at college. He had to speak with doctors and ask questions and get things in writing as I couldn't be there. He would call me and tell me what he was told. But he did it himself. He knows what his diagnoses were and what they mean. He knows what treatment he had to do or take. When it wasn't working, he went back and asked more questions.

I'm trying to get you to slow down, get your info together, maybe do a little research on it, write down your questions or what tests you might have missed having.

People on here are trying to help you. Saying that they aren't is a bit mean. Why do you think people have been trying to answer your questions? People want to know what tests you have had and the results....not to stress you out, but to help you.

Sorry, like I said I am just very stressed... I had to quit my job and move in with my mom, so I just feel like there is a lot I cant do for myself since I dont have any money. I wanted the diagnoses so bad, so that my mom would finally believe me... Shes the one that has to buy me groceries and all that stuff... But it's hard to even ask for help because she thinks im ridiculous and is just a stressed out b*tch any time I talk to her.

I made an appointment with the doctor that did my endo, and I dont think that I can get in until July. It's not that i'm not listening to what everyone is saying, I just dont know HOW to do what they are saying. I am clueless no matter how much research I do... And every time I think I got this figured out, something else comes up.

I dont think I said no one on here has been helping me, but if I did I did not mean that. All the help I have gotten so far has been from members of this cite, and I am extremely grateful for that.

Again I am sorry.. Eating gluten hasnt done much to help control my stress or anxiety :/

That is a good idea but not really what I'm saying. She has posts all over the forum about not being tested correctly, not being diagnosed with anything, and needing more tests. But, it sounds like she has had lots of tests and some real diagnoses. She doesn't understand them or maybe isn't trying to understand them? It appears that she just wants a Celiac diagnosis and is ignoring the other things the doctors have found.

Not trying to be harsh. She can't find her previous tests and doesn't know what was tested. She has a hernia but doesn't know what that is and doesn't appear to want to know what it is if its not part of Celiac disease. Lots of people are trying to help her but she is making that hard to do.

I can't think straight and im overly stressed. So if people are actually helping me, I guess I just cant see it.

I just didnt know hiatal hernia was a big deal because it cant be reveresed, and the doctor just gave me papers and sent me home... My mom was told about it when I was out I guess, but she hasnt done sh*t about informing me.... She just says they suggest this and this... I tell her I dont have any money for it and she says shed buy them, but she never does. She doesnt care at all about this, so thats probably why I didnt think it was a big deal.

At first I really wanted to celiac diagnoses, but now I dont even care. I know gluten causes problems for me, and I just feel like I need to have all the tests to rule it out, because I want to go gluten free, but I dont want to think about how I never got these other tests in the future.

Thank you for trying to help, but posting something like this just stresses me out even more.