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Member Since 16 Apr 2011
Offline Last Active Apr 20 2013 04:56 PM

#856642 Blood Test Came Back Positive, Now For The Biopsy

Posted by on 02 March 2013 - 11:18 AM

I think "they" say that a slice or two of bread, or a good  serving of crackers a day would be sufficient. 


I know it's crazy to keep yourself sick in order to get answers, but unfortunately that's what it takes!


If you have the will to keep to a gluten free diet for life, you could accept the doctor's diagnosis from blood work (a lot of docs won't diagnose on blood work alone!) and skip the endoscopy.


You'll get mixed answers if you ask whether you should do the scope or not, some will say "yes" some will say "why bother".  In part, a positive scope can solidify your determination to be disciplined about gluten consumption...I would get a copy of my blood tests and see exactly what they tested.  If they did a full panel, and several tests were positive, that is a pretty strong indication that the celiac diagnosis is correct.

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#856561 The Paleo Diet?!

Posted by on 01 March 2013 - 04:00 PM

I have completely given up grains, and it wasn't until I did so that I started to feel really good.  A nice side effect is that I also lost 35 pounds, without any effort or thought whatsoever.  On top of that, I am guessing my generalized inflammation has gone way down; I no longer experience the swelling/fluid retention I used to have.  I used to wake up in the morning with slits for eyes, my face was so puffy.  NO MORE!


I am sort of paleo/primal though I very occasionally indulge in a crunchy treat made from rice flour.  I also have eaten ( not more than twice in a month) regular potato, though I'm finding that sweet potato fries and sweet potato hash browns are VERY MUCH to my liking!  I used to get horrible carb cravings in the mid-afternoon and would raid the kitchen scrounging all I could find.  I no longer experience this in ANY WAY!  I was also a sugar addict, and since giving up refined sugars I no longer crave sweets.


I also eat yogurt, but not store-bought. I make it myself from local, organic milk.


All in all, I am a VERY happy camper with this diet.

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#854856 Thanks!

Posted by on 19 February 2013 - 02:23 PM

Well, I haven't been on the forum long but just to see others experiencing conditions and symptoms (autoimmune) like myself has helped me and my family out so much. It is great to have a place to go and feel you aren't crazy!

My 12 year old son has recently started symptoms of severe depression - extreme self doubt and insecurities on self worth, an eye twitch/rapid blink, and isolating himself. Knowing the benefits of removing gluten (and other foods) from my diet and my youngest son's diet (age three) that ten days ago I removed gluten from his diet and today his eye twitch is 90% gone, his mood is bright, talking, interacting, appetite has returned. I did bring him to the GP this week and asked him to please test for Celiac (as I wasn't tested myself) and got the "No, he has no intestinal issues". I didn't tell the doctor the extent of how bad his depression got as I know medication would be the first step and antidepressants in children terrifies me. I, at least got him to do a blood test and sure enough he is anemic. How does a 12 year boy get anemia? We eat beef/lamb 3-5 times/week, eat a lot of greens, he loves pumpkin seeds and eat a lot of them, raisins, fortified cereals, takes a multi vitamin. That is plenty of iron for anyone but given that gluten is involved I totally believe it is an intestinal issue of malabsorption. His doctor is against me changing his diet but just adding iron supplements.

I am mostly writing this to anyone else dealing with such a thing is to not doubt their intuition. I wish I never did because I believed in what doctors where telling me about myself well, I won't do it for my son(s). Thanks for a having a forum that isn't just the standard but opens up to so many other symptoms that really happens with this condition.



Your doc wouldn't test for celiac?  Sheesh.  There are a LOT of celiacs who do NOT HAVE intestinal symptoms, but they are definitely celiac and definitely suffering from it nutritionally.  If your doc is fighting you on the diet changes that are obviously helping your son, I think I might consider changing doctors.  You want someone in your corner, not someone you have to do battle with all the time.

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#850139 I Keep Turning Blue

Posted by on 24 January 2013 - 01:46 PM

Thanks again guys,
ravenwoodglass - it kind of looks like that but not quite as red, mine is more of a blue gray hue. I am really particular about what I eat and I make all of my own food and don't really eat with non-gluten free people, so I don't think I'm getting CC if I am I have no idea how. I do know that I have other sensitivities/intolerances and I am pretty good about staying away from them. Does your livedo get worse when you've had less sleep?
I went to student health and the RNP wants me to try amitriptyline for a week to see if it will help me sleep, and if it doesn't she wants to test my thyroid. she didn't even seem interested/concerned that I have been turning blue. she also said that she doesn't think my main symptoms (blueness, heartburn, and not being able to sleep) are not connected.
thanks again, AP

Please. PLEASE. Get new healthcare providers. Yours are blowing off something that could be very serious.Write a journal of symptoms, take that to your new providers. You want to have it written so you don't forget anything, and so you can include the circumstances under which this happens to you.
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#834368 The Total Iga And Total Igg : Can Lack Of Iga And Igg Be

Posted by on 04 November 2012 - 02:47 PM



These are only two links showing there might be a relationship between food intolerances and IgA/IgG antibodies. More stuff showed up at Google Scholar, I just did a cursory look. Two small revelations here; foods besides gluten can cause antibody production, and people with IgA/IgG insufficiency may have greater sensitivity to some foods than people with normal levels..

When I looked for causation of the IgA/IgG deficiency, I couldn't find food sensitivity as a cause for the deficiency. What I did find was that people who have those deficiencies develop problems because their bodies are more sensitive to food antigens because the barriers present in "normal" people aren't there in those with immune insufficiencies.

Don't know if that's helpful or not.
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#832627 Hip-Hip Hooray!

Posted by on 26 October 2012 - 11:13 AM

I am so pumped, I have lost five pounds (after months of trying!).

I am back in my regular jeans, it feels soooooo GOOD!

Not only that, but I went to urgent care for a sore throat and cough that just won't quit, and when they did my blood pressure I was a full 10 points lower on both systolic and diastolic than I've been in YEARS!!!

This primal/paleo eating is CRAZY GOOD!

:D :D :D
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#832529 Does Anyone Else Have A Problem With Dry , Blistering Lips?

Posted by on 25 October 2012 - 09:08 PM

Before I was diagnosed, I kept getting blisters on my lips. I thought that maybe the sun was having some weird effect. Once I was diagnosed, I realized that my lipstick was probably the culprit. I threw away all of my lipstick - but am still bothered with dry and sometimes blistering lips. I'm coming up on 2 months gluten free. Since I had no "classic" symptoms before diagnosis, I have no idea how well I am following the diet. I finally, just today, replaced my face moisturizer. Anyone else with lip problems??

Vitamin deficiency? Lips can be dry and cracked if deficient in B vitamins.

Does it seem to have any relationship to environment? Does it happen only in certain seasons, or all the time?

I would also, like the other poster, possibly look toward allergies.
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#822311 Last Ditch Rant... I Need Serious Help

Posted by on 08 September 2012 - 09:34 AM

It all started with reflux.


I don't wonder that you are at your wit's end. You have a lot of misery going on and I'm sorry the medical world can not seem to find a path for you.

Not being a medical professional, it is difficult to say anything too specific, and it is also difficult because you've had so many suggestions from so many people, one more might just sound like so much "noise". Be assured, there are a couple of folks here who have been at death's door (NOT an exaggeration) and come back from it. So my first suggestion is to not give up hope.

Next, do you think you might be able to go back into your post and apply a little edit? Perhaps you could break it up into smaller paragraphs of only a few lines each, it is much easier to read on a computer screen! You will get a lot more people to read through the details with comprehension, (I DID read them, by the way!).

That said, have you considered going grain-free altogether? You might want to drop all your supplements, and go to a VERY simplified grain-free diet. Eat only the lean meats that have proven to agree with you, only the vegetables and fruits that have proven to agree with you, only the nuts and dairy that have not given you trouble. I will go so far as to suggest you might be a candidate for the Specific Carbohydrate Diet or the GAPS diet. They are restrictive, but once you get going you can do well following the food lists that you can get for free on the websites. I'm partial to the Specific Carbohydrate (SCD) diet, and you can start it without going through all the introductory stuff. Just start using the food lists.

It is a diet that you want to give plenty of time to work. It can take a month or more to feel the effects. It was a lifesaver for my daughter-in-law.

The paleo/primal way of eating might also be a good try. Check out Mark's Daily Apple for more. Lots of good reading there.

Did they do any kind of testing for autoimmune diseases? White matter in the brain can be caused by a number of things.

I'll leave you in the hands of others for more thoughts...

Best wishes to you.
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#820185 18M Old - With Genetics Against Her

Posted by on 28 August 2012 - 01:26 PM

Add another rough day for the kiddo to help push me along with this gastro referral.

Total diet yesterday:
-1/2 cup cheerios
-2 chicken nuggets
-3 dehydrated greenbean chips
-5-7 saltine crackers
-6 peanuts (literally six, I count because of choking hazards)
-2 mini rice cakes

and soymilk.

All day long between 6am and 8pm.

Despite that, her belly was so hard last night I don't know how she was sitting down.
Ironically she does not have any weightloss, she is healthy by all measurement standards (weight and height are 70% and consistent) but with a diet like that she should be constipated, yet she has diarrhea. She went through three outfits yesterday due to diaper mishaps.

There is a chance your daughter could be sensitive to soy. There are quite a few here who cannot do soy products. Have you considered rice milk, almond milk, or perhaps coconut milk?

Just a thought...

Ahhh, interesting about your husband's thinking in regards to the allergies. In a way he is right, Americans claim to be allergic to things when in reality they are simply "sensitive". It is interesting that celiac seems to be on the increase in the Middle East. I'm not sure that knowing that would help your husband acknowledge the seriousness of the condition though.

A lot of us have had trouble getting our American husbands to grasp the "big picture" too. It is a long learning curve for them as well as us. It doesn't help that celiac is still relatively uncommon, though it is starting to receive more notice in the "mainstream". Hopefully he'll get on board with it before too long.
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#819657 Bloating Up

Posted by on 24 August 2012 - 08:56 PM

It looks like I have been glutened. I reacted at the store to smelling mustard on a hotdog. I have a problem with vinegar which I suspect caused that. Next I brought home some gluten free hotdogs and grilled them. About 4 hours later I noticed the bloat. That was also when my family was wrapping eggrolls in the kitchen, so I am only guessing what did it. I reacted to the smell of the eggrolls. They were cold by the way; they cooked them outside.

What is this bloating?

I gained 3 1/2 inches around the bellybutton. I have no pain. I usually have no D, but today I had that too. That was before I noticed the bloating.

Did you grill the hot dogs on a barbecue? Is it a dedicated grill to gluten free foods? If not, it could be the grill. There is a doctor show on the radio by a gastroenterologist, and he talks often about celiac. On his 4th of July special, he talked a lot about barbecuing and how much gluten residue can be left on a grill by other foods, and how hard it is to clean off.

I am sorry you are feeling lousy. :(
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#819547 I'm Terrified Of This Dx... :(

Posted by on 24 August 2012 - 12:35 PM

Okay, I realize you are already overwhelmed and this is all so new you might not have the energy to go searching for all these places...so here are a few more links for you...

Mark's Daily Apple

Specific Carbohydrate Diet (this was created for people with Crohn's Disease...you can jump into the full diet without going through all the beginner steps if you are not having the diarrhea and cramps and all the intestinal discomfort...just use the food lists and guidelines for advanced folks!)

GAPS Diet Same advice here...just jump in, don't worry about starting where the beginners start...just start using the food lists...

Read some fun stuff...

Cave Girl Eats

Chow Stalker
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#819528 I'm Terrified Of This Dx... :(

Posted by on 24 August 2012 - 11:12 AM

For almost a year now, I've had SEVERE fatigue. There are days when I will sleep 10-12 hours, get up for a few hours, and go back to bed for another 3 (even with a CPAP). I also developed what really appeared as IBS and there were times when it was crazy painful after I ate, but was ok after using the bathroom. My upper abdomen started feeling sore to pressure and I complained "my liver hurts". All tests came back normal.

This, on top of a recently diagnosed PCOS/insulin resistance along with borderline high cholesterol. While going through the PCOS diagnosis, I was found to be deficient in iron and vitamin D.

I am 40, a stay at home mother, and scared to pieces. I was afraid before because I sleep SO much and feel it isn't fair to my kids, but now...holy cow. I just wasn't ready for a celiac disease dx on top of an insulin resistance issue.

I have no idea what to do. I was overwhelmed as it was (and still am) with the insulin issue, but now I have to add into the equation gluten issues??

I am sorry you are feeling so overwhelmed, but I can see quite a few of the great forum members have already passed on some worthy advice.

I do have an exception, and that is rice. My brother is diabetic (Type 2) and has found that rice really spikes his blood sugar badly. I concur with those who suggested just eating whole foods (meats, vegetables, a little starch) or going whole-hog (pardon the pun) into something like paleo- or primal-eating, and the Specific Carbohydrate Diet or GAPS diet might be helpful too. Google them, easy to find!

Don't think you need to replace all your gluenous stuff with expensive gluten-free stuff. There's plenty to eat without it! This doesn't have to be expensive.

Just know that you will be amazed by how much better you feel when you get your diet going. There is a learning curve for it, but it won't take long before it's second nature!
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#818758 Postive Blood Test, Negative Biopsy And Genetic

Posted by on 20 August 2012 - 12:16 PM

I also want to second what the other posters said.

It would be a really good idea to get copies of your daughter's blood test results, and see for yourself what was tested and what the actual levels were.

If only a TtG was elevated, it could point to something other than celiac. Other autoimmune conditions can cause the elevation. On the other hand, if she improves on a gluten-free diet, that is a huge and obvious answer! She will get better off gluten!

Biopsies can miss damage, and they depend so much on a lot of pairs of eyes. If the doc took too few samples, if the slide was not prepared properly, if the pathologist interprets a "borderline" result as negative, lots of things can be missed. It is especially common to diagnose someone as negative who might be in the earliest stages of celiac, without yet having had it long enough to create damage. You can build a great population of antibodies long before they actually start doing damage.
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#815085 And Now My Thryroid Is Off?!?

Posted by on 31 July 2012 - 01:52 PM

Grrrr!! :angry:

I just got back from the doctors to review my tests the doctor ran after I was diagnosed with celiac a month ago. My blood is fine (always good to know since I had to have my spleen out from ITP - autoimmune clotting disease), my cholesterol is fantastic, and vitamin levels are above average (even my B12). Great right? Almost...

My TSH is at 14.27 but this lab's normal reference range is 0.20-6.00. I'm well over double the acceptable range. :( Darn it! As far as I understand it, that means my body is sending out extra thyroid stimulating hormone to try and get my thyroid to do what it's supposed to do. It's under-active; something could be wrong with it.

The doctor is sending me to test my T4 and antithyroid antibodies. I'll know the results in mid August.

I am so annoyed. I feel like two autoimmune diseases are enough! Do I really need a third? Come on! ... Yah, I'm having a pity party; I feel like the fates are really having some fun with me for having too good of a life up to this point. I have a really good man, great kids, we live very comfortably middle to upper middle class... it's too good, so let's mess with her...

I'm okay. Just pi$$ed. I'll be over myself in a few days. It's just really nice to be able to come here to vent. KWIM?

Anyways, I want advice! I know very little about thyroid problems except that my aunt and grandmother had hypothyroidism and were practically bald... I'm vain about my hair so this worries me; mine is thinning already. I also know that I suspected this years ago and was tested but all was normal then.


What are some good books or resources I can read to educate myself on hypothyroidism and Hashimoto's? Any support forum's similar to this one (meaning a really good one LOL)?

What tests should I have to determine what the problem is exactly? And what tests should I have to look into problems that an under-active thyroid can cause?

What are the common treatments? Can it be treated with diet? What about alternative treatments and remedies (I'm not keen on taking hormones but will if there are no other options)?

Any help you can offer by pointing me in the right direction is truely appreciated!! Thanks. You all are a great bunch. :)

It is definitely frustrating to be fighting autoimmune conditions and their side-effects. I'm sorry you've had to add another one to your list.

Your doc is doing fine, he needs to look at Free T3, Free T4 and thyroid antibodies.

One of the better books on thyroid is "The Thyroid Solution" by Ridha Arem, but you can find a lot for free from some really good websites. For starters,
Stop The Thyroid Madness. Very well put together, well-supported information, and up-to-date.

The forum at about.com is a great one. Very active, a lot like this one.

Alternative treatments (diet, natural supplements) won't be of much help. Autoimmune thyroid disease destroys your thyroid tissue, and there is no "natural" substitute that will be as good as one of the prescription remedies. The good thing about thyroid is that they are really bio-identical, and there is no harm in taking them like you would fear from estrogen replacement. I do recommend being open to some of the different thyroid meds, every individual responds differently to each one, just because of formulation differences. I take a natural/synthetic combination (Nature-throid and Unithroid) that works well for me.

Once you start treatment, insist on being tested for your Free T3 and Free T4 for adjusting your meds. Most thyroid patients seem to find they feel best when their hormone levels are around mid-range. Trying to adjust by TSH alone can lead to disaster! Many people suffer terrible ups and downs because their doctor is continually aiming for a moving target; TSH can move quite a bit through one day.

An underactive thyroid can make you feel pretty lousy. Fatigue, dry skin, falling hair,elevated cholesterol and blood pressure, headaches, brain fog, weight gain, heart palpitations, anxiety are a few of the things that can bother you. The good thing is, with treatment most of it retreats.

You may find that the thyroid will heal somewhat since your celiac diagnosis. I've not had that experience, I've had my Hashi's too long I think. But I have heard of people who have had their thyroid problem heal significantly with a gluten-free diet. There is some research that suggests Hashi's might be caused by gluten.

Hope that's a little bit helpful.
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#813056 Bob's Red Mill All Purpose Flour

Posted by on 23 July 2012 - 12:32 PM

I bought Bob's Red Mill All-Purpose flour a few weeks ago, because it was on sale. I made some chocolate-chip "clumps" with them, and me with a major sweet tooth, had to try some of the batter. I tasted a strange, very RAW taste. What is it coming from, do you know? The flour is mostly comprised of bean flours...though there IS potato starch and tapioca flour.

I second the vote on the beans. I don't use Bob's all-purpose for that reason. I don't like the beany taste from ANY of the bean flours.
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