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

Help; Don't Know If Cd (long)...

trimummy of 2

Recommended Posts

trimummy of 2 Newbie
trimummy of 2
Posted

wow, this website has been a godsend...

decided to sign up and post b/c it seems like you all have so much experience dealing with a lifetime of celiac disease and/or uncertainty about celiac disease. just the uncertainty is driving me BONKERS. BONKERS!!!!!!!

this will be long...............

i have been experiencing gi etc symptoms since giving birth 10mos ago that make us lean toward celiac disease. HOWEVER - no definitive answers from labwork. here's the scoop....

Nov. 2004 - gave birth to baby boy (beautiful i might add ;) )

*No dairy, eggs, soy, nuts, seafood in MY diet due to his food allergies (i nurse him)

*ate lean meat, LOTS of fruits & vegetables, occasional starches (pasta once every 1/2weeks), but lots of oats w/ wheat bran/w.germ

*had abdominal distension, bloating, LOTS of gas/flatulence, horrible foul odor (my poor husband), occasional cramping, loose stool

*Thought the increased stool frequency and awful gas was due to the increase in fiber in the diet. Retrospectively (having experienced more “normality” after abstaining from gluten), I see how abnormal my bowel habits and other symptoms were.

***Received ultrasound in Feb (prior med group thought i had a hernia) – showed lots of gas, bowel, and some dilation of the small intestine, neg otherwise

April 2005:

*son fell off the weight chart completely, so in may we started him on solids at 5mos. we were worried sick.

May 2005 - July 2005:

*i ate same as previous, but increased starch intake (pasta, bagels) due to my increased triathlon training load.

*symptoms became more severe, with onset of loose large volume diarrhea notable for urgency, borderline fecal incontinence during runs, and extremely painful cramping and bloating/gas. Gas has had foul odor, stools float, and have lots of undigested food in them. Cramping pretty much put me on the couch all day (tough w/ 2 young kids), and doesn't stop when the diarrhea stops.

*these symptoms have seemed to wax and wane – be intermittent, with 2-4 days every week experiencing these "flare ups", and then things calm down, back to the more mild baseline (just distention, bloating, and gas).

July 2005 - Aug 16:

*moved due to husband's job

*in the beginning of july -stopped gluten in the diet - hubby is an MD - one day, said, "hey, just for the heck of it, why don't you stop eating anything with gluten in it, and just see what happens". PRESTO....

*now had a diet without gluten, dairy, eggs, soy, nuts, or seafood. ugh!!!!!

*diarrhea and cramppping symptoms totally resolved within a week, only left with baseline.

*became more engorged, son started gaining lots of weight

Aug 17:

*saw an internist, got labwork done

*tTG = neg

*IgA = neg

*IgG = pos

*other bloodwork = neg for malabsorb., anemia, etc.

*creatine & liver stuff a little off - MD thinks may be just due to my high training levels, but more labwork is being done.

*i have an appt with a GI doc in a couple of weeks.

*ever since.....

have tried gluten again, only to react very dramatically within 24-48hrs with the same gi symptoms. it is obvious i am very affected by the presence or absence of gluten in my diet. it takes another 48-72 hours for the symptoms to start to diminish.

This whole soap opera has been exhausting and frankly, just downright depressing to me. I am on the verge of breakdown. My MD will be taking more labwork from me, including repeat antibody testing. I have been off and on gluten during august, and have only been STRICTLY off gluten for a week now. when i am off, and feel no symptoms, i sometimes think - am i imagining this? and then i go on gluten again and am nearly non-functional on the sofa all day, my symptoms are so bad, and exhausting, and i remember again what it's like.

ques:

1. would being off gluten for only 1.5 mos affect the antibody and other blood results? i read that stuff sticks around for months.

2. anybody hear anything about undiagnosed celiac disease in a mom affecting her milk supply? or would my son actually have it?

3. Would being back on gluten for 10days before the repeat tests (i will get them in 2 weeks) affect the results? Should I do that?

This situation is just causing me so much anxiety. I have a 1/2 Ironman this weekend, but my head is just into this situation, I feel so depressed by this. I know there are folks in my extended family that think I'm just imagining this.....I feel like the only person in the world who believes me is my husband. Luckily, I am getting terrific medical care, and they have not ruled ooout celiac disease at all. It's just the waiting that kills me. I know that ideally, I need to go on gluten for 3+ mos, then get everything tested w/biopsy. But considering my son's reaction, I just can't do that until I stop nursing him, and plus, my diarrhea/cramping symptoms are so profound when I go back on gluten that I don't know if I will be able to handle 3mos of that. Hubby thinks it's celiac disease manifesting it's ugly head, triggered by childbirth for some reason. I just don't want to be a lab guinea pig for a year and then just get diagnosed with IBS b/c they "don't know".

I know you are not doctors, but any help, or even just reassurance would be so wonderful.....this is really getting me down. Thank you for any responses!

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

Celiac.com Sponsor (A8-M):


nettiebeads Apprentice
nettiebeads
Posted

Sounds like celiac disease to me. You know, if it looks like a duck, quacks..... The fact that you feel so much better w/o gluten means either severe gluten intolerence or celiac disease. The D you discribed certainly fits in with the celiac disease. And of course if you are still nursing, you have to take care of your body for your son's sake. Why do you need an official dx? I never got one from my gp, I mean official dx. He told me to cut out gluten; I went gluten-free, my D stopped, ergo celiac disease. But yours are pretty much the classic symptms and it is not uncommon for celiac disease to rear its ugly head during or immediatly after pregnancy.

Carriefaith Enthusiast
Carriefaith
Posted

Welcome to the board! It definately sounds like you could have celiac disease or a wheat/gluten intolerance or sensitivity. You have had a positive dietary response, which means that your body cannot tolerate it. Pregnacy is a trigger for celiac disease, which makes me think that you might be celiac.

1. would being off gluten for only 1.5 mos affect the antibody and other blood results? i read that stuff sticks around for months.
I'm not sure about this, I have also read that antibodies can stick around for awhile (obviously if you had one positive result IgG); however, being off the gluten could have affected the other tests.

2. anybody hear anything about undiagnosed celiac disease in a mom affecting her milk supply? or would my son actually have it?
You son could have celiac disease (if that is what you have) since it is genetic.

Would being back on gluten for 10days before the repeat tests (i will get them in 2 weeks) affect the results? Should I do that?
It would be better than not going back on it, since the result may be more accurate. However, you would have to cosume a lot of gluten and if it makes you and your baby that sick it may may not be worth it. This decision will be totally up to you. Another option..., you can get gene testing done to see if you have the celiac gene. This can be done without going back on gluten
KaitiUSA Enthusiast
KaitiUSA
Posted

Being gluten free before testing can screw up results. So yes, 1.5 months gluten free would interfere.

It also depends how high the results would have been...say it was in beginning stages and was weakly in the blood...then that amount of time probably would have lowered it to the point it would not be detected.

tarnalberry Community Regular
tarnalberry
Posted

Yep, the tests can be altered by being gluten-free for as little as a few weeks. (It varies from person to person whether it sticks around for a while or not.) But look at your symptoms! I don't see anything questionable about it! Dietary challenges are valid tests in and of themselves! Don't ignore what your body is telling you!

aikiducky Apprentice
aikiducky
Posted

From what I'm reading you already have tested this SEVERAL TIMES! And your husband seems to think it's pretty clear, too. Will a lab result really make it somehow more real?

A gluten challenge is a valid test like other people pointed out. Cutting out gluten from your diet seems to consistenly improve your health and adding it back give you the same symptoms every time again. Do you think it's just a coincidence? :P

Pauliina

trimummy of 2 Newbie
trimummy of 2
Posted
  • Author

thank you all for your responses. just the validation itself helps like you wouldn't believe. i think when you are chronically sick with GI symptoms, for some reason, it seems like the rest of the world thinks it's in your HEAD. and that is so frustrating.

i have decided NOT to go back on gluten before my repeat tests in a week. putting myself through that is one thing, but i am not going to put my nursing son through it too. i will go back on gluten for a couple of months in november, after i am done nursing him. i am already worried about him - just noticed his 2 little teeth coming in have black marks on them (celiac disease related demineralization?), and will be making an MD appt for him asap. i am also getting more intensive kidney testing done - anyone here have celiac-related kidney issues?

thank you so much again for the replies.....

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted
i have decided NOT to go back on gluten before my repeat tests in a week. putting myself through that is one thing, but i am not going to put my nursing son through it too. i will go back on gluten for a couple of months in november, after i am done nursing him. i am already worried about him - just noticed his 2 little teeth coming in have black marks on them (celiac disease related demineralization?), and will be making an MD appt for him asap. i am also getting more intensive kidney testing done - anyone here have celiac-related kidney issues?

thank you so much again for the replies.....

It's problably a good idea to stay gluten free if it's affecting you and your baby that much to eat it. Keep us posted :)

Eliza13 Contributor
Eliza13
Posted

I haven't had an "official" diagnosis b/c my doc believed that my symptoms were enough. I had obvious abdominal distention and fat in stool (tested for this), along with a host of other symptoms (see below). I have had symptoms for about 11 years and was always told it was "in my head" or "stress-related"....I was pretty angry when my latest doctor connected the dots b/c of all the past bozos who had missed it.

I guess the best advice I can give is to look at your stool and compare how it looks when you eat/don't eat gluten. If you notice a major difference (as I do when I eat differently), then maybe that is all that you need. This is a tough one b/c most celiac organizations advise that people get an "official" diagnosis, and since I am not a doctor I will not advise you. I guess you have to decide for yourself what the best option is for you. Keep in mind that some of these tests are really invasive (my doc's words).

In my case I had ALOT of symptoms....I also have PCOS (many with PCOS are gluten intolerant as well) and I also had what looked like DH on my elbows, bum and head. I'm not sure what all of your symptoms are....

This is a tough one....One that I have struggled with myself sometimes....(get tested, or to not get tested????). Consult with your doc and hubby and I am sure you will come to the right decision.

Toodles.

Archived

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

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


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • 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    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.