Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Whats Wrong W/ Me....seriously?

linz7997

Recommended Posts

linz7997 Explorer
linz7997
Posted

Hi!!

Thanks for reading this...ok...here goes.

I have always had what my family refers to as "stomach issues" since I can remember. I know that when i eat some foods (its not even a real pattern of food) I immediately have to run to the bathroom. And if by chance that day i dont have to run to the bathroom...well, thats because i am on my cycle of not going to the bathroom for 4 days at a time. I have noticed that sometimes dairy effects me...but not always...it seems to really be bothersome if i eat/drink it on an empty stomach...does that even make sense?? I alternate between horrible cramping, constipation, bloating, diarrhea pretty much every day of my life. Eating has become something that causes stress and anxiety, which of course only makes it worse. I have no energy, I literally could take a 4 hr nap at any given time. And then there are the headaches. I have gotten CAT scans and MRIs and they have found no cause for the headaches...but they are very sharp pains that last for a short time but I get many times during the day. Im pretty sure I am anemic since the slightest touch bruises me. I went to the doctor thinking I had IBS and they gave me some meds to help w/ my stomach and they did nothing accept to severly dry out my mouth. Im just getting so sick of being sick....all the time. Im sick of having to carefully plan out where I am going to be and if there will be a bathroom near by!! Its sooooo embarrassing!!! Not to mention the fact that my moodiness and lethargy is taking a toll on nearly every aspect of my life. Anyway...today is the first day that I am attempting to go gluten-free...though its hard because I think everything in my pantry is full of it !!!! :)

So there you have it...what d'ya think?? Do you think this gluten thing is my problem?? I kinda hope it is because then at least I can start to get better, since nothing else has worked!!!

Any help or anything would be greatly appriciated!!

Lindsey

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


queenofhearts Explorer
queenofhearts
Posted

You could very well be Celiac from the symptoms you describe.

Congratulations on figuring it out for yourself! For some reason doctors just don't seem very clued-in about this disease. You might want to be tested now, though, before going gluten-free, because it you have been without gluten for long, the tests aren't accurate.

Believe me, this forum is the most fabulous resource you will ever find on celiac disease, as you have probably already discovered-- you'll find lots of info & moral support here. Welcome!

Leah

AndreaB Contributor
AndreaB
Posted

Yes, definately cut out all gluten and throw out what is in your pantry that could tempt you to leave the diet. If you haven't checked the main page of celiac.com do so here for the page of safe and forbidden foods. Another thing that you will want to try to do is eliminate dairy also. Go totally off of it for two months then reintroduce it to see if you have any problems. It may be that you can tolerate small amounts. I am mildly dairy allergic but not intolerant. The only dairy product I have is butter. If you find you can handle small amounts I would suggest evaluating which dairy item is most important to you.

Welcome and be sure to look around this forum. You'll find all sorts of informative and loving people here. :P There is a learning curve to this diet so don't be to hard on yourself if you have accidental glutens. Many people have also found it beneficial to switch out health care products that have wheat in them. Another thing is the toaster, if you plan on eating rice bread you will definately need to get a new toaster. There are many things but take them step by step as you can afford to. You also would need to get rid of scratched teflon pans, plastic ware etc as you have the funds to replace them.

linz7997 Explorer
linz7997
Posted
  • Author

so can i just go to a general family doctor to get tested?? is it a blood test???

AndreaB Contributor
AndreaB
Posted

You just need to ask for the celiac panel. It includes 5 tests from what I've read.

jerseyangel Proficient
jerseyangel
Posted

Hi Lindsey and welcome to the board :)

Your symptoms could point toward gluten intolerance. There are about 200 symptoms associated with Celiac Disease!

What I would suggest you do is make an appt with your doctor--ask for the complete Celiac Blood Panel--a regular set of blood tests (CBC, Metabolic Panel) will not tell you anything about Celiac. It is important for you to be consuming gluten prior to the test. This is important: if you plan to be tested do not stop eating gluten! I know it's tempting to test yourself, but to get an accurate result, you have to be on a regular, gluten containing diet right up until the test. Your family doctor can order the test for you, or you could choose to see a gastroentrologist.

If a firm diagnosis is not important to you, you could go gluten-free yourself--that's a personal decision. Just keep in mind that if you go off gluten, it will skew the result of any blood test or biopsy you have done.

Good luck! :)

AndreaB Contributor
AndreaB
Posted

Another option if you want to go gluten free now is enterolab, but it is pricey. Click Open Original Shared Link for more info.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


dionnek Enthusiast
dionnek
Posted

I would recommend a gastroenterologist - I went through 9 doctors before finally going to a GI who figured it out right away! Your symptoms do sound familiar though :) And if you decide to just try the diet (or if you do get a positive diagnosis for celiac), don't give up after a few weeks. I've been gluten-free (I think) for over 2 months now and still do not feel much better. It is a long process and a lifetime change, so don't expect results right away. It is frustrating I know to keep with it when you don't see improvement, but I look at it like everyday I find something else that I need to change, and eventually I will be totally gluten-free and my intestines will be healed :)

mmaccartney Explorer
mmaccartney
Posted
Another option if you want to go gluten free now is enterolab, but it is pricey. Click Open Original Shared Link for more info.

I have to disagree, I did not find Enterolab to be pricey. Sure it costs $360 for the celiac panel "complete" however I paid more for my 2 endoscopies and colonoscopy let alone all the other tests I was given and had to pay 20% of......I wish I would have gone to Enterolab in the first place like I was considering....I think I paid more in the long run with my Dr and his tests....

jerseyangel Proficient
jerseyangel
Posted
I have to disagree, I did not find Enterolab to be pricey. Sure it costs $360 for the celiac panel "complete" however I paid more for my 2 endoscopies and colonoscopy let alone all the other tests I was given and had to pay 20% of......I wish I would have gone to Enterolab in the first place like I was considering....I think I paid more in the long run with my Dr and his tests....

I did too! The 20 per cent that we had to pay (endo and colo, pathology and blood work) came to more than if I had just done the Enterolab. The problem is that I didn't know about Celiac, or any of this until after I was diagnosed! If I had it to do over, knowing what I do now, I would have gone for the Enterolab testing--in addition to it being cheaper, it would have given me more information. The Celiac Blood Panel, if covered by insurance is a good place to start, though--Lindsey had said that she was considering going off gluten, so I took that as she was still eating it.

AndreaB Contributor
AndreaB
Posted

Patti and Michael,

I have found a lot of complaints about the price of enterolab which is why I stated that. I am relieved to have them available and didn't even go through doctors so I wan't aware of what insurance covered or didn't. I have read on the slide presentation that enterolab has that was posted by someone else on some enterolab threads that they will start offering testing for allergies although I don't know when. I had all the tests done that they offer and was pleased with the quality of customer service as well. :)

jerseyangel Proficient
jerseyangel
Posted

Andrea--Probably because some insurance plans are much better than others! The one we had up until last year would have covered all of my testing--I only would have been responsible for the office visits. I guess my opinion would have been different in that case! Leave it to me to get so ill and need this kind of testing after we had to go onto this other plan (through my husband's company) Hindsight is always 20/20 :D

Sharon1422 Newbie
Sharon1422
Posted

I understand exactly how you feel. I am new here. I'm actually going for my biopsy on Thursday. I've already had the blood test done and have for sure test positive.

I have had eptopic pregnancy. Several ultra sounds. They decided that it was IBS so I started taking that medication which helped for several months.....I thought.....but then they didnt work at all, so......I go online and get some cleansing pills....that worked for a little bit.... Then I decided that something else is wrong so I just searched out another doctor cause the first one just had no personality and I had no confidence in him.

He also did a Colenoscopy and found out I also have adhesions from the eptopic pregnancy.

I was getting bloated on the smallest meals.....like I had a twelve course meal and feeling like I couldnt breath. Its been a long haul to find a doctor that actually new what test to take.

I am three weeks into my gluten free diet and already I am feeling better.

I know how you feel, dont give up you will find a doctor that will help.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,190
    • Most Online (within 30 mins)
      7,748
    Jlp523
    Newest Member
    Jlp523
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...