Jump to content

  • 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

Omg- I Got A Diagnosis!

Guest BERNESES

By Guest BERNESES
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

sasha1234 Newbie
sasha1234
Posted

hey,

I'm new to all this.

I'm 19 and had been off of gluten for the past 4 years after years and years of undiagnosed stomach problems. I stumbled onto a gluten-free diet accidently after going on an elimination diet to determine the cause of some other symptoms, for an unrelated health problem, and amazingly enough gluten-free felt amazing. I have tons of other allergies and health problems but wheat and gluten never seemed to get identified as being problomatic. However this summer I was hospitalized with a really bad C-Diff infection and never properly healed so when they decided to do scoping for that they decided they might as well test me for celiac. I have been back on gluten for the past 6 weeks (6 weeks of hell as you all know too well)leading up to the scopes and I had my gastroscopy and colonoscopy and biopsies done this morning and have been tentatively diagnosed as celiac from what they could see. My blood work 2 months ago prior to my going back on gluten was negative (no surprise there) and I had the blood tests done again today aswell so now it's just a matter of waiting for my results.

What is the HLA DQ8 gene and DQ2 that you guys have been talking about? Also, I don't seem to fit the profile of most celiacs. For me, gluten makes me put on insane amounts of weight... I weighed 120lbs 6 weeks ago and now am sitting about 146lbs. This is one of the primary reasons no one has suspected me of being celiac though it has certainly baffled my doctors that I can put on that much weight that quickly without any effort. When I first went off gluten 4 years ago I lost a huge amount of weight and I expect this to be the case now that I ge to resume my gluten-free diet once more. Have any of you had anything like this? Or did you all suffer from weight loss on the gluten diet. I'm curious to know because my dad has suffered from weight problems all his life as well as gout and I'm wondering if I do in fact have celiac, that he might suffer from it aswell. Either way I will urge him to get tested.

Thanks for any advice you can offer. It's awesome knowing there is a whole community of people out that that know how painful this process can be!

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

Celiac.com Sponsor (A8-M):


debmidge Rising Star
debmidge
Posted

Wishing you the road to good health now that you have been shown a diagnosis.

Congratulations!

D.

Guest nini
Guest nini
Posted
hey,

For me, gluten makes me put on insane amounts of weight... I weighed 120lbs 6 weeks ago and now am sitting about 146lbs. This is one of the primary reasons no one has suspected me of being celiac though it has certainly baffled my doctors that I can put on that much weight that quickly without any effort. When I first went off gluten 4 years ago I lost a huge amount of weight and I expect this to be the case now that I ge to resume my gluten-free diet once more. Have any of you had anything like this? Or did you all suffer from weight loss on the gluten diet. I'm curious to know because my dad has suffered from weight problems all his life as well as gout and I'm wondering if I do in fact have celiac, that he might suffer from it aswell. Either way I will urge him to get tested.

Thanks for any advice you can offer. It's awesome knowing there is a whole community of people out that that know how painful this process can be!

I was extremely overweight before my dx of celiac... no matter what diet I had tried I wasn't able to lose any weight. After going gluten free, I have lost over 100 pounds in a little less than 3 years... So yeah, weight gain is def. a symptom and problem with some celiacs.

Judyin Philly Enthusiast
Judyin Philly
Posted
I was extremely overweight before my dx of celiac... no matter what diet I had tried I wasn't able to lose any weight. After going gluten free, I have lost over 100 pounds in a little less than 3 years... So yeah, weight gain is def. a symptom and problem with some celiacs.

Sasha and Nini

I too have always been so overweight..there was a thread on this a while back.

since going gluten-free i've lost weight with not trying but once found 'lays p/chips..don't lose as fast.

I get so annoid that they don't have 'loss of weight or gaining of weight' guess they'd think all us 'fatties' would say, OH I WANT TESTED..WELL COULD HAVE SAVE THE INSURANCE COMPANIES ALOT OF $$ if my Drs would have KNOWN to look for it in the obese.

judy

jerseyangel Proficient
jerseyangel
Posted

I know--it seems like too many drs. still have 'the skinny kid with the big stomach' view of Celiac--and if you don't fit the profile, they won't go any farther with it. I was (and am) always about 20 lbs. over what I should weigh. Only in the months before my Dx, did I lose any weight due to the Celiac. By then, I was very ill and everything I ate went right through me. People shouldn't have to wait many years, until severe problems take hold, to get tested.

Judyin Philly Enthusiast
Judyin Philly
Posted

Yep, Patti-

It was my dr of 20 years who heard me ----when i went in and said--

"water 'D' for 5 weeks, can't eat anything, can't go out of the house, no control--would get in the garden and 'woops' AND GAINED 16#'s...he listened then and got the test done with out me asking cause i didn't think of celiac's because i was FAT.

JUDY

floridanative Community Regular
floridanative
Posted

Berneses - I'm late seeing this but CONGRATULATIONS! I know how weird it is to find out you have a disease and feel so excited but since it requires no chemo for treatment that's enough to get excited about right there! :D

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

Celiac.com Sponsor (A8-M):


Guest BERNESES
Guest BERNESES
Posted

Thanks floridanative- yeah- gluten free is cake (no pun intended) compared to chemo.

As far as HLA DQ2 and DQ 8 go, this is my understanding. About 95% of people with Celiac's have the DQ2 gene and about 5% have the DQ8 gene. However, in people of European ancestry, about 35% of the population has one of these genes. So, if you have neither gene, Celiac's can be ruled out. If you have one of the genes, or both, Celiac's CANNOT be ruled out. the "gold standard" is still the biopsy BUT my doctor's take on it was that at the time I went gluten-free, I had all the "classic" symptoms, they improved on the diet and i have one of the genes. She felt it was enough to make a diagnosis.

But not everyone has the "classic" symptoms. Many people gain weight and doctors are just starting to realize that it has many faces (celiac's).

Rachel--24 Collaborator
Rachel--24
Posted
So, if you have neither gene, Celiac's can be ruled out.

Not having either of the 2 main genes can never rule out Celiac 100%. There is a small percentage of Celiacs who have neither DQ2 or DQ8. Both my GI and my new doctor have told me that they haven't yet identified all genes associated with Celiac so a negative gene test alone is not enough to rule out celiac disease.

momandgirls Enthusiast
momandgirls
Posted

Hi - I just found this site and your post. I'm also in MA. My daughter's in the process of being tested for Celiac Disease at Children's. I haven't been totally happy with our GI there and have heard good things about the Celiac Center at Beth Israel. It sounds like you were happy with Dr. Cheney. I'm thinking of getting a second opinion for my daughter - her antibody test was positive, her CeliaGene test was positive and her biopsy was "borderline." Do you know if Dr. Cheney sees children? Thank you so much!

Claire Collaborator
Claire
Posted

Rachel is absolutely right.

A have a new GI specialist - wrote about him in another thread. He was emphatic about this - saying that I do not have Celiac associated with the two primary identified genes - which does not mean that I do not have celiac. There are other genes not yet sufficiently studied so not yet available for testing. This is like the SCA genes that I was recently tested for. There are 26 of those and only 9 that they can actually test.

Also there is always the gluten sensitivity thing - a rabbit trail. My new doctor considers genetic gluten sensitivity to be celiac - though it is not currently recognized as such. I have not yet tested for that.

Endoscopy and colonoscopy scheduled for the end of this month. Even though I was negative on the Celiac gene test, he will be looking for evidence of celiac. Rather surprising for a GI to take that approach.

He thinks the negative blood work in the presence of symptoms is very iffy. Many local labs have little to no experience with celiac and really don't know how to process the sample adequately.

Claire

Guest nini
Guest nini
Posted
Hi - I just found this site and your post. I'm also in MA. My daughter's in the process of being tested for Celiac Disease at Children's. I haven't been totally happy with our GI there and have heard good things about the Celiac Center at Beth Israel. It sounds like you were happy with Dr. Cheney. I'm thinking of getting a second opinion for my daughter - her antibody test was positive, her CeliaGene test was positive and her biopsy was "borderline." Do you know if Dr. Cheney sees children? Thank you so much!

there is no such thing as a "borderline" biopsy. either there is damage or there is not. If they saw anything remotely looking like damage then that IS confirmation. With her antibody test being positive, she has Celiac period.

with the biopsy, they either didn't take enough samples OR her system is only in the beginning stages of the disease and she doesn't have complete flattening of the villi yet, BUT if there is ANY flattening at all or inflamation, This is Celiac.

Guest BERNESES
Guest BERNESES
Posted

That's right Rachel- I forgot about that part (that some people have neither gene). I'm still learning about the genetics aspect of all this. And there is no such thing as a "borderline" biopsy. And with the positive blood test and gene test it seems crazy that there is any question at all in your doctor's mind.

Claire- your doctor sounds awesome! I think that down the road (at least I hope!) that more doctors/researchers will start to realize that gluten intolerance and Celiac's are the same thing.

As far as Dr. Cheney goes- I'm REALLY happy with her. I'm pretty sure that she sees children as well. She also has an office in Lexington which is easier to get to than Boston for me. My guess is she'll take one look at those results and there won't be a question. I'd call her. I don't have the number handy, but I think it's listed on this site under recommended doctors. She did have a long waiting period (I waited six months). If that's the case, I wouldn't wait to have your daughter go gluten free. Just my opinion.

sasha1234 Newbie
sasha1234
Posted

thanks for all your imput, i appreciate all the info you've thrown my way... i'm sure i'll be talking to you all soon

sasha

  • 1 month later...
francelajoie Explorer
francelajoie
Posted
Just wanted to let those of you who were following my thread about seeing a Celiac specialist- Dr. Cheney at Beth Israel Hospital in Boston- that it was worth it! She called me today with my test results from Prometheus.....

I have one of the HLA DQ genes (I forget which one) and as she said, due to my "exquisite" sensitivity to gluten and having the gene, I have now been diagnosed as having Celiac's. She won't make me go through the gluten challenge and another endoscopy just for the sake of a biopsy because it would make me too sick.

Just 8 days short of being gluten-free for a year!

I'm leaving (right now) for 5 days but I'll elaborate when I get back. Sounds strange, but what a freakin' relief!

Hi Berneses,

Was all your testing covered by insurance? I was thinking of going to see her.

Archived

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

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


  • Member Statistics

    • Total Members
      131,858
    • Most Online (within 30 mins)
      7,748
    Janet1234
    Newest Member
    Janet1234
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.