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

Gf After 3 Years And Still Not "better"

SJN1279

By SJN1279
in Coping with Celiac Disease

Recommended Posts

SJN1279 Newbie
SJN1279
Posted

I'm nick and this is my first post to this message board. I was diagnosed with Celiac Disease over 3 years ago. After years of people thinking I was faking and pure intestinal torture, i adopted the diet and finally began feeling relief. Granted, I do make an occasional mistake(I was taking Maalox up to this year!) but overall I am much better than I originally was.

My current progress is that I have roughly 3 days wear I feel excellent and 3 days were a feel not so good. All I consume are Gluten-free foods and I was just wondering is it "normal" to never feel perfect?

I have some brief questions, if that is okay?

1. What symptoms did you have with Celiac? I had numerous symptoms (sexual, strep, fatique) that weren't clearly defined under any celiac-symptom guide.

2. I consume rice crackers that say they are gluten free on the package, but also say they may contain wheat due to cross contination in little print. Should I stay away? I also consume Gorilla Munch cereal and that says it may contain traces of peanuts and I have been tasting peanuts my last four boxes :)

3. Has anyone hear ever gone to see Dr. Peter Green in NY? I saw him a few months ago(as a belated second opinion)and I thought he was really unprofessional. At first he said that I didn't have Celiac Disease without looking at any tests. He also prescribed an anti-depressant just because he thought it was all in my head. However once he the test came back that I had low cholestorol, he now wants to put me through the full testing procedure. I heard he was one of the best in the field, does anyone have any experience with him? He hasn't returned my calls for two weeks, but I think testing may be a good idea right about now..

Sorry about ranting :)

I look forward to talking to all on here.....sorry for any mispellings, I'm bad at checking my work :)

Nick

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

Celiac.com Sponsor (A8-M):


frenchiemama Collaborator
frenchiemama
Posted

Have you been tested for any other food allergies or intolerances? That would be the first place I would look.

jknnej Collaborator
jknnej
Posted

Nick,

I know how you feel about never feeling perfect. I never do, either. I have a friend or two that do not have Celiac that are like me also. We must have something else going on with our bodies.

I would stay away from those crackers..better safe than sorry.

My symptoms before going gluten-free were bloating, diarrhea, cramping. Now that is gone but I have other problems such as voice loss, nausea, anxiety, etc. that I never had before going on the gluten-free diet.

I live in Arizona so I can't say I've been to a dr. in New York. But if he was not a good doctor, I wouldn't go there no matter who recommended him. Part of being a good doctor is listening b/c most of the time you have done more research on the condition than they have!

Good doctors are rare; I have only come across a few in my life and out of all of the docs I've been seeing lately, I only like my GI doctor.

Good luck and I hope you get better!

SJN1279 Newbie
SJN1279
Posted
  • Author

I have been tested for other intolerances, but not for a while. My main symptoms are gas, bloating and constipation. I appreciate the quick responses. Maybe I should stay away from those crackers.....need to find a new snack :)

KaitiUSA Enthusiast
KaitiUSA
Posted

Hey Nick :D

Dr Green is supposed to be an excellent celiac doctor. He is considered one of the best. However, I did not see him personally but I have went to other doctors who thought it was in my head and I switched doctors a few times. If you did not like him though, then find a different doctor.

How were you originally diagnosed?

If you had blood tests to diagnose you have you had a followup to see if the #'s came down?

If you had a biopsy have you had a followup done to see if the damage healed?

Have you changed products such as shampoos and things like that which can get into your mouth very easily? If your girlfriend eats gluten does she kiss you directly after? Things like this can contaminate you...so you have to be really careful.

Testing for food intolerances again may be something to consider. What did the tests show last time you had it done?

What I did for a while was keep a food journal and then mark when I would feel bad and I tried to pinpoint what was making me feel bad. Even if you feel bad a few days later you can look back on the foods you have ate over the past few days and maybe make a correlation.

Since you are still having symptoms the best thing to do is stay away from those crackers and see if that marks some improvement.

There are over 200 symptoms with celiac so it is very broad and some people don't get any symptoms at all. For me I had nausea, anxiety, weight loss, fatigue-those symptoms had to be the main ones. I did have other symptoms but they were minor compared to these.

After gluten free the symptoms improved by month 3 and went away almost completely by month 8. However, when I am glutened, alot of these symptoms come on strong for about 2 weeks.

Guest nini
Guest nini
Posted

I'm 2 years gluten-free and although I feel A LOT better, and I've gotten off almost ALL of the medications I was on (still waiting to be able to get off Atenolol), I am still having occasional bouts with the big "D" and my joints and muscles hurt and ache all the time. I'm sure I may be accidentally getting "glutened" somewhere, but I'm not sure where. It could be my house since my husband isn't gluten-free and I can't seem to get him to stop leaving crumbs in things. Anyway, I think it is possible that there is still something else going on with me but I really don't want to go through more testing to find out. (just stubborn and stupid I guess!)

tarnalberry Community Regular
tarnalberry
Posted

Since you are still experiencing problems, yes, I would stay away from items at risk for cross-contamination, like the rice crackers. That does restrict your options, as there aren't that many things produced on gluten-free-dedicated lines, but until you feel better, you need to be conservative.

You mention your primary symptoms being gas and bloating at this point. Have you tried eliminating dairy and/or soy? Are there certain fruits or vegetables that are more likely to cause this than other things you eat? Those two culprits are pretty common causes.

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

Celiac.com Sponsor (A8-M):


Guest Viola
Guest Viola
Posted

If you have stayed gluten free, any tests you may have now would show a false negative I believe. I think you have to go back on gluten foods for several weeks to get proper test results.

SJN1279 Newbie
SJN1279
Posted
  • Author

I eat Soy yogurt and Soy Cheese Pizza, but am trying to avoid dairy. 3 years ago they said I wasn't lactose intolerant, but who knows. I also eat spinach, carrots and citrucel fiber almost everyday, which may give gas. But without those things, I more than likely won't have a bowel movement.

tarnalberry Community Regular
tarnalberry
Posted

Unfortunately, avoiding dairy can be just as tricky - if not harder - than avoiding gluten. Are you confident that you have eliminated all sources of lactose and casein? (Medications often have lactose, and many many things have casein in some form or another. In fact, if you're eating soy cheese, it's almost guaranteed that you aren't dairy free, because there are only two, hard-to-find, brands of truely dairy free cheese.) Many doctors don't go past investigating dairy as a lactose problem, but besides having issues with the milk sugar, you could have a problem with the milk protein.

Also, the soy can be a problem as well, and might be something else for you to try eliminating for a few weeks. (I know it sounds like a lot of eliminations, but it's a test.)

SJN1279 Newbie
SJN1279
Posted
  • Author

I know i consume Casein....and I do have milk in certain products. However, wouldn't my blood tests state an allergy to either?

KaitiUSA Enthusiast
KaitiUSA
Posted

They would only detect an allergy if there was a true allergy...maybe you are not allergic but are just sensitive to it...did you have an allergy or intolerance test done?

celiac3270 Collaborator
celiac3270
Posted

Dr. Green is the most knowledgeable in the field. Whether or not he is professional as a physician, I can't tell you.

SJN1279 Newbie
SJN1279
Posted
  • Author

I will have to give Dr. Green another shot. I have nothing to lose except for 10 dollar co-pay and bridge tolls. Maybe he can actually help.

tarnalberry Community Regular
tarnalberry
Posted

nope, unless you went through York for IgG antibody testing, your blood tests wouldn't have identified a casein intolerance. if you had serum allergy testing, it would probably have revealed an IgE allergy to casein, but the two are different reactions in the body. for me, my reaction to casein is actually quite like my reactions to gluten, but it was hard to identify that until I did an elimination diet, cutting out... the vast majority of foods... and then reintroduced dairy in specific tests twice - two separate occasions during the course of a week. soy can be much the same.

it's unfortunate that doctors don't better recognize non-IgE food problems; it could save a lot of their patients a lot of trouble.

printmaker81 Rookie
printmaker81
Posted

Nick,

I don't think you necesarily have to be allergic to dairy and soy for them to be hard on your body. My doctor, who is a celiac himself, told me to stay off any dairy or soy for at least a year so my gut could make a complete recovery, even though my blood results were negative for an allergy. Have you had endoscopy to access the damage? Maybe your gut hasn't had the chance to really heal up properly.

Also, I have had a hard time with Gluten-Free products. Anytime, I have eaten breads or cookies or even gluten-free pastas, my stomach gets upset. I think it's all the processing. Maybe try to stick to things that are naturally gluten-free and not so processed.

I hope you find out something and start to feel better.

Good luck with the doctors, too

Archived

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

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


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    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...