leadmeastray88

Why not use quinoa flakes instead of oats? I can't tell the difference in my baking!

Had doctors appointment today...reviewed symptoms...noted that Zantac did not seem to be doing the trick.....talked about eating licorice and then feeling chilled and tired, noted hot face, noted occasional cramping and diarrhea, noted issues even though eating bland.....discussed my thoughts that I might have gluten or diary intolerance...doctor felt that I would be having more pain and blood in stools if celiac.......she is leaning towards IBS......I have looked up the symptoms: abdominal pain or discomfort often relieved or associated with bowel movement, chronic diarrhea\constipation, white mucus in stool, bloated abdomen and feeling that you have not finished bowel movement....although I have stomach ache or gnawing, it is not really relieved or related to BM , no mucus and no feeling that I have not finished BM....gave me a script for losec - one pill a day - scheduling an ultrasound for abdomen in new year - check for hernia or gallstones....if I request may do celiac test...but she does not feel this is warranted at this point.....wonders if my body is reacting to the fat rather than the gluten as I suspect......so, I will try the new script and see what happens.....

Here, we like to call IBS "I be stumped". It's basically the diagnosis docs give you when they don't know what is wrong. Personally, I didn't take that as an answer. I tossed the script and demanded answers. And your doctor is wrong if she says that you need to have bloody stools to have Celiac. To me, it sounds as if she is disregarding your concerns without exploring them further. That is not right.

I would highly suggest going back to your doc and ordering the blood tests. It can't hurt. You are the one who decides if it is warranted, not her. She can't tell you how you're feeling or how you're supposed to feel. It's obvious that you have a problem with gluten, looking at your reactions to it in your first post. That is telling you something! In my opinion dietary response is the best test of all.

I hope you keep exploring your options! Take care

Hi there,

I had vitamin B12 deficiency prior to going gluten free and prior to my diagnosis. I take sublingual B12 tablets now and am doing fine.

I agree with ShayFL that the most telling of your tests is the 'slightly flattened mucosa'. This is from Wikipedia:

"Impaired absorption of vitamin B12 in the setting of a more generalised malabsorption or maldigestion syndrome. This includes any form of structural damage or wide surgical resection of the terminal ileum (the principal site of vitamin B12 absorption), forms of achlorhydria (including that artificially induced by drugs such as proton pump inhibitors), as well as bacterial overgrowth (such as in blind loop syndrome)."

You said that the damaged mucosa was found in your ileum, and that is where B12 is absorbed, so that is why you're deficient. You would think your doctor would put two and two together with this one, because you said he doesn't know why you're deficient. There you go, that's why. The cause however is obviously not clear because you've ruled out possibilities such as parasites.

You should ask your doctor if he will do the bloodwork for Celiac. Ask for ALL of these, not some but all:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

And it would also be a good thing to rule out any other possibilities!

I hope you find the answers to your problems soon!

Here's an easy recipe that I just got!

-Glutino pretzels

-Caramel Hershey kisses

-Whole almonds

Place pretzels on a cookie sheet, place a Hershey kiss on each pretzel. Pop in the oven until chocolate is soft, pull out and push a whole almond on top.

The caramel oozes out, SO yummy! And HIGHLY addictive!

Nick,

I have been dating the same guy for 6 years now, and I was diagnosed just this summer. I can tell you that not one thing has changed between us. He was actually really happy because he didn't want to see me suffer anymore. And he knows what happens when I accidently eat it and tries really hard to keep me safe. The only thing that HAS changed is now we don't go to the university cafeteria to eat, or go to the same restaurants. It actually turns out that our favorite has gluten free alternatives and are happy to cater to my needs.

We have talked about what will happen when we get married, and he understands that our house needs to be completely gluten-free but he is welcome to eat it outside the house (at lunch on a work day) and whatnot. He actually really enjoys my gluten free cooking so food isn't an issue. When we go to friends' houses for parties I bring goodies that I can eat as well.

If the right person comes along, they will understand and will be willing to make the change for you.

Good luck!

I just thought that I would mention that I was diagnosed with acid reflux prior - I was on prescription Losec for 3 years, eventually it got so bad I had to up the dose to 2 a day just to feel a bit of relief.

After going gluten-free, I've never had to take another Losec so far.

Could be a symptom for you as well! Get tested

Yes! Your symptoms could definitely be attributed to Celiac. It's a good idea to rule Celiac out because it can cause all kinds of other problems if left untreated. (i.e. other autoimmune diseases)

You need to ask your doctor for ALL of these blood tests, not one, not some, ALL of them or they won't tell you anything:

-IgA

-IgG

-tTG

-Total IgA

There's no reason why your doc should refuse you this. See what the levels are, and go from there. You should get an endoscopy with biopsy as well. The most important part of all of this is you NEED to be eating a 'regular' amount of gluten until after all testing is complete! No gluten "lite"! The reason you want to get all the testing done is because you don't want to cut gluten out completely and then second guess yourself later if it really is Celiac causing your problems.

After all this is said and done, you can always try the gluten free diet for awhile and see how you feel. Many people here are self-diagnosed gluten intolerant, and are comfortable with that decision.

No matter what you choose to do I hope you feel better soon!

I have to agree with Lizard00.

It does really sound like Celiac since his blood was positive, and it's not a "low positive" if he's IgA deficient which he clearly is... so in reality his IgA levels are probably extremely high.

I would take the bloodwork as enough evidence because some Celiacs will never have a positive biopsy no matter how much gluten they eat. You don't want to poison him any more. Maybe your doctor will give him a positive dx based on bloodwork alone. You should consider also that many Celiacs also have intolerances to other foods, dairy being one of the more common. It's possible that 'inflammation' is being caused by both gluten and dairy.

Good luck!

Hi there! Welcome to the board!

It's hard to find a GI who is even familiar with Celiac to begin with, nevermind one who specializes in Celiac. That may be hard to find, but of course it wouldn't hurt to do some research. If you can, go for it!

As for you being overweight, I know there are people here who experienced this as well instead of being underweight as is the "norm". You'll find that there is not two people here who have exactly the same symptoms and it's amazing to see how symptoms can be contradictory. For example some have diarrhea, some are constpated, etc. So no you are not alone with the overweight part and it's too bad your GI is using that as a reason you couldn't be Celiac. He's wrong. Since your daughter is Celiac there's a very high chance you could be too. Don't let him sway your decisions. Go through with the endoscopy but make sure he knows what he's doing. He needs to take at least 5 samples from your intestine and from different areas.

In any case, I hope you find all the answers here that you are looking for. Ask away! And again, welcome!

I would ABSOLUTELY sign this letter.

Although most of my problems have been resolved by a gluten-free diet, I am curious to know the answers to the questions you mentioned in your letter. I also want to provide support for anyone whose problems did not resolve on a gluten-free diet as prescribed by Dr. Fine.

Perhaps you should add that his genetic testing can be inaccurate - as they only test for the beta chain. AKA Don't tell me that my DQ2*0202 gene can't be a Celiac one if you don't know the alpha part!

The only thing is, I was blood tested 5 years ago. Could I have had a negative test then and a positive one now? But then again I don't have the celiac genes, only the gluten sensitive ones.

It's very possible that you could get positive results, IF you were eating gluten.

You've been gluten free for awhile now, long enough to make the results inaccurate. If you want to re-do the bloodwork you'll need to go back on gluten for a long time to re-create the damage that has been repaired already. The good news is that you haven't been gluten-free for too long, so I don't think it's too late.

..And you don't necessarily need to have the genes to be Celiac. There are people here who have been clinically diagnosed with blood/biopsy and don't have the 'typical' genes. Although it is more common to see the Celiac genes in patients with Celiac.

Would baseline blood tests possibly be useful for somebody like Scully, to see how things are going with diet? Might be more convenient, long run, than Enterolab.

I don't see why that would be necessary, considering her bloodwork was negative.

There's nothing to base her 'progress' on.

Hi,

I was recently diagnosed with Celiacs from a blood test. My TgA number was really high (80) and my IGA number was normal (2.24). Before that, I also recently was diagnosed with parasites d. fragilis. The antibiotics I took for it didn't seem to do much (my symptoms seemed worse. I had really bad headaches and nausea), but the doctor wanted me to retest before taking more drugs. I'm still waiting for the parasite test to come back, but I think I still have them. Is it possible that I don't actually have Celiac and that the parasites are giving a false positive? Are there other reasons for getting a false-positive? I'd rather have a temporary problem than a permanent one... so i suppose i'm in denial.

A while ago someone thought I might have a sensitivity to gluten, so I stopped eating it (as far as I knew). The stomach cramps have not been as bad, but the diarrhea has persisted - it's really fizzy/bubbly, is that typical of Celiac?

I have a specialist appointment in about 3 weeks, and I'm told only he can order the biopsy.

concerned... Hunger-ian.

Hi there,

I didn't know you could 'treat' parasites with antibiotics. I could be wrong. I thought antibiotics could be the cause of parasites because of the killing of the good bacteria?

I would find it hard to believe that the parasites are causing a high tTG count. tTG is the most specific blood test for Celiac, so I'd be 99.9% sure you have it.

Your diarrhea is symptomatic of Celiac. Whatever you do, DON'T stop eating gluten before your biopsy! The biopsy is the 'gold standard' test for it, and it will only be accurate when you're on gluten.

Sorry I couldn't be more help with the parasites, but I remember my GI telling me that I could have parasites as a result of a round of antibiotics. That part doesn't make sense, to treat parasites with what causes them.

Hopefully someone else will chime in soon.

I'm pretty sure I read a post a few weeks ago about Starbuck's Pumpkin Spice Lattes CONTAINING gluten.

Yup, that was me who started that thread

Here's the link:

Open Original Shared Link

I have called Starbucks Customer service directly, and they never got back to me. Not by email or phone. So I don't know that they contain gluten for sure, because caramel spice is supposedly safe in the US and Canada. Could be the spice part / something else.

Here's a recipe someone else posted for homemade pumpkin spice latte:

Open Original Shared Link

Any mention of Celiac in the media could lead to increased awareness, but like lots of things on the show, the lines were spoken so quickly that I wouldn't be surprised if most people watching didn't catch the word Celiac.

If I had a nickel for every time they mentioned a disease during differentials and had no clue what it was I'd be rich. Doesn't mean I look it up to see what it is.

I have to admit though, being on this forum has made me so aware of other conditions I could almost diagnose them myself

I remember one episode a guy had dry eyes and mouth and I blurted 'Sjrogen's syndrome' and my boyfriend just looked at me. Then House was like 'Could be Sjrogen's'. He was baffled, haha!

I guess any publicity is good publicity though!

It's still possible that you are Celiac. You had the bloodwork done 6 weeks gluten free and that is long enough to give you a false negative. You need to be eating gluten to have accurate bloodwork. Even then, we all know here that the bloodwork can be terribly inaccurate, as people here have been diagnosed with POS biopsy but had NEG blood.

If you find you need that official diagnosis to stay gluten-free, then you'd need to eat the equivalent of 6 slices of bread a day for atleast a month (I think that's the suggested amount/time) but given your increased sensitivity, I would think that keeping yourself healthy should be enough to keep you on the diet. If you feel so much better on it, you should stay on it.

And I agree with the other poster. Having a combined household like that is tricky because of cross contamination no matter how hard you try, flour flies everywhere and gluten hides in every nook and cranny.

You need your own everything (butter, peanut butter, jam, mayo, anything you stick a knife in, toaster, wooden spoons, pans etc.) unless you decide to go totally gluten-free in your house.

I hope you feel better soon. Sometimes even when we're positive we've eaten something safe, we mess up. It happens. If you're still feeling sick re-read ALL of your labels. Manufacturers change their ingredients without warning sometimes.

I hope you find the root of your problem! Good luck!

Thanks so much Shay, you're always so encouraging

I understand that if it is indeed pre-cancerous/cervical cancer that it is very treatable and many people live on their lives without it every reappearing.

I guess I'm just concerned because I'm only 20 - I haven't even had kids yet. And I want to someday. I don't want anything to get in the way of that.

Again, thanks for your encouraging post

Shouldn't be. Very romantic. Lucky you. Could just be from the pap, unless it was bleeding before.

I'm pretty sure it was bleeding before.

I went for the Pap last week and it was bleeding, so she figured it might still be my period so we rescheduled it to yesterday. Still bleeding.

It's hard not to think the worst when I don't know anything about it.

At this point, from what I've researched and from what you guys said, it seems like it could only be either:

-Chlamydia (I think its unlikely, unless my BF has cheated but I highly doubt it)

-Cervicitus/HPV/Abnormal cells/Cervical cancer

-Just really sensitive

Not sure. Just very worried.

Friable just means "easily irritated and prone to bleeding". Why this is often associated with Std's, some people are just made this way.

That's good to know, so it may be nothing at all.

I have bled every pap smear I've ever had. I have an easily irritated cervix that is prone to bleeding if you so much as give it a stern look.

Problem with me is, I've had a pap smear before and the exam and results were normal - no bleeding.

Also I've never bled after intercourse. This is all news to me.

I would find it hard to believe if it was chlamydia.

I've had the same BF for 6 years - we were each others' first and only. Never been apart.

Is chlamydia a possibility if you've only had one partner??

Hey guys,

I'm always able to turn here for advice on Celiac/gluten issues but I'm hoping someone could provide me with some advice for this.

I went for my yearly physical w/Pap and all yesterday, and during the exam my GP mentioned that my cervix was bleeding, that it's 'friable'. I'm nowhere near my period (and I'm on the pill) so it's not that.

She seemed concerned and said we'll wait and see what the Pap results are but she's going to send me to a specialist.

Has anyone else had this? I can't look on the internet because it freaks me out - cervical cancer/HPV and everything.

Help?!?

Celiacs should never shop at Bulk Barns. The staff are not concerned with cross contamination and customers certainly don't care. As much as one wants to save by shopping there, it just isn't worth the gamble. I hope I don't sound too blunt.

I shop at Bulk Barn and have never had a problem yet.

At mine, they keep all of the gluten-free products in a seperate area, so the scoopers don't get mixed up with the other flours/starches. If they were with other flour products I would be concerned.

The report shows:

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (subtype 2,9)

I have the DQB*0202 gene too.

I had a dispute with Dr. Fine on this, as Kimball genetics states that the Celiac genes are DQ2 (encoded by alleles DQA1*0501 or *0505 plus DQB1*0201 or *0202) and DQ8 (encoded in part by DQB1*0302).

How can he possibly rule out that DQB*0202 isn't a Celiac gene when they don't test for the alpha part?

Dr. Fine seems to think that 0202 gene holders are at a small risk. Yet he does not distinguish this in his testing. It would be interesting to go through Kimball and see what they say about it.

I'm no expert in genetics, but this seems pretty clear cut to me.

Do you feel better gluten-free?

Hi Konaa,

Hang in there. This is the hardest part of it all - getting through the testing. And like ShayFL said, you need to be eating gluten (a lot, like 4-6 slices of bread a day) for the test results to be accurate.

Your symptoms, to me, seem very suggestive. Even if the blookwork comes back negative, I highly suggest getting in to see a GI and getting an endoscopy done to check for damage. Then voila - You have your diagnosis!

The problem with going gluten-free without testing is you'll probably second guess yourself and start eating gluten again since you don't have a clinical diagnosis. Lots of people here are self-diagnosed and are comfortable with their choice. But a clinical dx may help keep you on track diet-wise. After all, you don't need a doctor to be gluten-free!

If you're worried about the expenses, it's really not any more expensive than a normal household, I've found, if you stick with naturally gluten-free whole foods like fruits and veggies, meats and nuts, etc. You don't really need the processed gluten-free items and they're not good for digestion anyway. They're hard on your system at first.

Once you go gluten-free, you're right, it takes about 3 months until you feel completely better! But trust me - the wait is worth it. You won't believe how much better you feel, if you are truly Celiac/Gluten Sensitive or whatever you want to call it.

Welcome and I hope you feel better soon!

Take care

I have tested Redbridge beer, did I already mention that............

Yes, but you failed to mention what your results were. Twice