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Gemini

Member Since 25 Aug 2006
Offline Last Active Dec 18 2014 11:32 AM
*****

#936123 Feel Like There Is No Answer

Posted by Gemini on 04 December 2014 - 11:09 AM

If anyone is still reading this thread..... I am curious to the reaction he is having going back on gluten.

 

He has been back on gluten for a little over a week now.  The first few days, I thought he was have no side effects of going back on a gluten diet, but over the first 9 days he has only pooped 3 times.  The first 2 times were sludge, like always, this last one was very hard (but still the pale color) and he had a hard time going.  This may not sound like a big deal, but typically he poops 3 (or more) times a day.  Is this a sign that the gluten is affecting him, or could it just be a change in diet in general?  Thanks for any insight!  I know that constipation can be a symptom for celiacs, but it has never been a problem for him.  It has been diarrhea for almost a year now, extreme while on gluten, but still going on even when he was gluten free.

The symptoms he is experiencing could defintely be from resuming gluten.  ESPECIALLY the pale colored stool....a possible sign of fat malabsorption.  Maybe they could also do some stool testing to check to see if that is happening?  That is an easy test.  Lots of people alternate between constipation and diarrhea with Celiac but the docs like to call that IBS.  ;)

 

I know some docs like to think that they can find damaged villi by a certain age, and I am sure this doctor is trying to help by taking lots of samples but a negative biopsy on a small child does not rule celiac out.  It can take YEARS for damage to accumulate to the point where they hit a sweet spot.  Here is a paragraph from the University of Chicago Celiac Disease center, which outlines what to look for during the biopsy. The increased intraepithelial lymphocytes are often an early indicator so checking for this is very important.

 

 

Definitive diagnosis depends on a positive small bowel biopsy and a demonstrated response to a gluten-free diet. Diagnostic criteria include architectural changes in the small intestine, including mucosal villous atrophy with crypt hyperplasia and increased intraepithelial lymphocytosis. The rate of change may be slow and the changes nonspecific.


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#935920 Feel Like There Is No Answer

Posted by Gemini on 02 December 2014 - 11:44 AM

Thank you for the info.  We are going to be testing everything this time, but now I am in the waiting game for the next 2 months.  Just put him back on a "normal" diet (besides dairy) for the gluten challenge.  Then she is running all kinds of blood work and likely doing an upper and lower GI a week later (as soon as the blood results are in).  Can you give me some insight on what "other immune" problems could be causing the ttg -igg to be elevated?  I have heard reasons for the ttg iga to be elevated but there doesn't seem to be much info out there on elevated ttg igg.  Thanks in advance!

I am sorry you are going through all this as it is beyond frustrating.  The more common associated conditions that can trip the IgA-tTg are thyroid disease, autoimmune liver disease, Crohn's Disease or Type 1 diabetes.  This does not mean a person has them, as you know, but the possibility is there.  You are also correct in that there is little out there with regards to IgG-tTg and what an elevated number may mean.  However.......

 

Testing is such a crapshoot in a 2 year old as they do not have a mature immune system.  This is why people go years before a diagnosis can be officially made because it can take years for enough damage to occur and for the immune system to mature to obtain a valid test.  But you have some positives here.  Your son's growth changed for the positive on the gluten-free diet.  I know there is still a problem with loose stools but that can take awhile to go away completely AND there could be additional food issues that haven't been pinpointed yet. 

 

My niece has a now 11 year old son who had Celiac related issues from birth.  I was diagnosed with Celiac shortly after he was born.  He was scoped at the age of 2 and the GI doc (who was an idiot as far as I am concerned) said no celiac.  His duodenum was inflammed but of course, in a 2 year old, good luck finding damaged villi.  So, he counseled against the gluten-free diet.  Honestly,where do these people get their licenses to practice medicine?????? I am this child's blood related aunt and I nearly died from undiagnosed Celiac. His duodenum was inflammed and he counsels against the gluten-free diet as a trial?  My niece, unfortunately, is one of those who believe whatever the guy in the white coat says so he was never placed on a gluten-free diet. This kid had severe muscle weakness in his neck and could not lift his head as an infant until much later than many because of it.  He is so undersized, it is not funny...he is the same size as his 7 year old brother.  He has since developed asthma and has developmental problems.  So, he is now in the "honeymoon" phase of Celiac and some of his symptoms have receded from meds and the hormones that are starting to kick in.  It drives me absolutely crazy to see this and still no gluten-free diet being tried and he is the size of a 7 year old.  They think he is getting better because symptoms often go away during the teen years, only to return with a vengeance later in life....just like me.  This poor kid is going to wake up one day with a multitude of AI problems and crappy health all because some arrogant GI couldn't find damaged villi when he was 2 years old and he didn't trip the blood test then.  I don't even think they have retested him since and I just wanna scream, at times.

 

I think it a good thing you are doing what you can do to have your son tested but if everything comes back without clear answers, I would say put him back on a strict gluten-free/dairy free diet and see what happens.  Four months is not very long to get any definitive answers, even in a 2 year old but the growth thing is saying something to you.  Test away for now and let us know what the outcome is.  Hang in there because sometimes, this takes longer than we like! 


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#935569 Celiac Disease And Thyroid Issues - Do They Go Hand-In-Hand Or Are They Separ...

Posted by Gemini on 24 November 2014 - 06:59 PM

Hashi's does occur frequently with Celiac and I think you'll find that if you have undiagnosed Celiac for long enough, all that inflammation does not just cause damage to the small intestine. The immune system starts to attack other organs and the pancreas and thyroid gland seem to be the most popular targets. My Hashi's diagnosis came 20 years before the Celiac diagnosis but in hindsight, I triggered for Celiac at a very young age. The damage showing on my adult teeth when they came in was proof of that.

I would say that yes, having Celiac can cause other AI diseases to happen, as a result of prolonged inflammation and other genetic factors that may come into play. Ask anyone with multiples, like myself. I don't need a fancy study to figure that out.

I would say to try the gluten-free diet for awhile and see if your symptoms calm down. If they do not, and your tTg remains on the higher side for too long, then thyroid testing would be in order. As suggested, it would help to have your thyroid antibodies checked because that will tell you if thyroid disease is brewing.
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#935496 Feel Like There Is No Answer

Posted by Gemini on 22 November 2014 - 05:41 PM

You said the DGP was normal and that is the test which tests for dietary compliance. The actual number is important with this test because the lower the number, the better dietary compliance is.

If the tTg-IgG is elevated while the DGP is not, then I would look for other autoimmune related problems to Celiac which may be going on because, as was mentioned earlier, certain other related conditions can elevate tTg. Usually it's the IgA which is elevated with other conditions but if the overall Total IgA is low to begin with, then there might be a deficiency so it wouldn't probably elevate with other conditions. People then look to the IgG testing for answers.

I have Hashi's thyroid disease also and it took awhile for my tTg-IgA to come into normal because of that. My testing for dietary compliance, which was the AGA-IgA and IgG back when I had it done, came down to really low numbers after 1 year gluten-free. The longer I was gluten-free and my thyroid calmed down, the lower my tTg got. I am not sure if other related conditions would raise IgG but it's worth looking into.
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#934964 Celiac Testing And Insurance

Posted by Gemini on 15 November 2014 - 12:14 PM

SMRI......I made the point of saying I was not trying to start an argument but I knew someone would. My information is 100% true. You haven't read the law because it's in there. It is illegal to refuse insurance to anyone but like it or not, those with pre-existing conditions WILL BE charged more than healthy, younger people. I am sorry that you have a problem with the truth but the truth it is. That is part of the reason so many people are unhappy with the law, as it stands. It is not going to work like insurance in other countries with a single payer system. You have to buy a policy and how much you are charged depends on many factors, one of them being age and pre-existing conditions. The only people who will not pay more are those with very limited income, which is as it should be. I have no problem subsidizing Americans with limited income.
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#930400 Eye Problems?

Posted by Gemini on 11 September 2014 - 11:34 AM

Hi Strawberry!  It's been awhile since we have heard from you.  I hope things are going well but for this eye problem.......

 

Do your eyes feel overly dry?  Do you have mouth dryness?  I ask because Sjogren's Syndrome is common with Celiac and it can cause vision problems and eye pain.  I have Sjogren's myself so thought I would start there.  I don't mean a little dryness......Sjogren's will give you extreme dryness.  Do you have more dental problems than usual?  That's another symptom of Sjogren's, as it applies to your mouth.


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#930119 New Here And Need Help With School Policy

Posted by Gemini on 09 September 2014 - 12:13 PM

It should then not be stated as a fact per board rules: "5) Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry."

OMG...this one nearly had me choking on some fruit I was eating!!!! 

 

As there is no legitimate source on the subject of super sensitivity, and we now have a whole section devoted to a subject that is not recognized by any legitimate Celiac organization or doctor, do you want to explain to me why you answered StephanieL in the manner you did, when she actually had some really good suggestions, based on expert experience on the subject, to offer?  This coming from someone who thinks you can be glutened from melons or that there is gluten in soil which can uptake into food that is being grown?  :blink:  Oh, my....that is priceless...... :lol: ...and just my opinion, of course!  ;)


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#929992 How Did You Heal Your Gut? Besides Giving Up Gluten...

Posted by Gemini on 08 September 2014 - 11:51 AM

There is no proof that cutting out all grains will help a person heal faster.  I did not and continued to heal on a slow, even keel.  Healing takes what it takes in each person and, unless you figure out that you have an additional food allergy or intolerance to a certain food/grain, there is no reason to.  Especially if you were like me, a classic Celiac who desperately needed to gain weight after diagnosis.  You will not stabilize your weight if you cut out grains.  You also need variety in your diet and grains will give you that, along with nutrients and fiber...if you eat the right grains.

 

I think the hardest part for people to accept is that coming back from a celiac diagnosis will take a lot more time than expected and you just have to be patient.  Getting a thyroid problem under control is important also and balancing all this can take time.  Although my gut felt better almost immediately after going strictly gluten free, all of the neuro and other issues took 3 years to completely disappear.  I have 4 AI diseases in total and have to admit that almost 10 years out from diagnosis, I feel great and lead a completely normal life that is jam packed with work, exercise and everything else life throws at ya.  I actually do more than people without all my health issues but I think its because I eat better than anyone I know and take very little in the way of meds.  If I can achieve this, anyone can, although I am sure it doesn't feel that way sometimes. I would just be wary of cutting out too much food variety when trying to recover.


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#928697 Half A**ed Diagnosis.. Not Sure If I Am Actually Celiac

Posted by Gemini on 28 August 2014 - 12:16 PM

With a DQ2 gene, you have the predisposition for developing full blown Celiac.  With what you have described, it sounds like that has already happened.  One thing I always say to people who don't have a definitive diagnosis is.....if you are that sick when you eat gluten and have the genetics for it......high risk genetics to boot......why would you do a challenge?  Could you request a biopsy?  Although the biopsy has a somewhat high rate of false negatives, you could use that as a tool to see what is going on in your gut right now.  It may not give you a diagnosis but if you are having problems, it could rule out other problems for you. 

 

If you do not or can not do a challenge (and I don't blame you one bit), just stay gluten free and be very strict about it.  I would also recommend taking digestive enzymes because it sounds like you are having problems with fats right now.  I did too....for a long time.  They will help you digest the food that you are having trouble with now because your gut is most likely not healed.  Also, dairy could be causing issues for you, as it does for so many of us.  Are you eating dairy?

 

There are many reasons why people with full blown Celiac test negative on the blood work and it doesn't mean you don't have Celiac.  But if you are doing a dietary trial, you have to be strict, even with cross contamination, or you will get sick.  You may want to read the Newbie 101 thread, which has great information on how to do the diet right.


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#928694 Abnormal Screening Mammogram...worried

Posted by Gemini on 28 August 2014 - 12:02 PM

Do you think celiac causes or contributes to abnormal growths?  Whether it's canker sores or like what I've had this year uterine polyps, gallbladder polyps, etc.  Just wondering.

 

I will celebrate for sure!  

I think it could and the reason could just be out of control inflammation.  Canker sores would be more obvious because your mouth is the start of the digestive tract.  But most illnesses start with inflammation so there could be a possiblity of it causing many other things.  I doubt there would be any studies done on it, though.  There is no money in Celiac Disease for doctors so we don't get much attention as far as research goes......only to come up with a stupid pill so people won't have to follow the diet.  I'd rather them study the link between associated conditions and a cure for those!  Sjogren's Syndrome can be a bitch......I would love it if I had normal moisture in my eyes and mouth.  :(

You don't appreciate these things until you lose them.......


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#928090 Alcohol

Posted by Gemini on 21 August 2014 - 09:45 AM

The reason many have not heard of this is because it is totally untrue.  I would not rely on information from an "experienced immunologist" unless they also have Celiac Disease and have done their homework.  Even then, we have diagnosed Celiacs come on this board and they believe all the urban myths out there that have no basis in reality.

 

Most wines are processed in stainless steel containers and those which are done in oak barrels (probably more so in Europe) have had testing done on the finished product, with levels that are not enough to cause a problem even in sensitive celiacs. This topic has been discussed at length here and I lknow someone posted recently the info on this. I am extremely sensitvie, drink wine every day, and do not have any troubles from it.  Most other Celiacs will tell you the same thing.

 

The fining process has been discussed also and I am hoping someone will post further info as I don't have time to look for it right now.  I will, but not right now.  I am at work but wanted to post something quick because this topic is getting old and the info is just wrong.  There is no gluten in wine.  Headaches usually come from sulfites and yes, BarryC,

we celiacs have sensitive guts anyway so if you have not healed fully, wine could be a problem because it is harsh on the GI tract.  I could not drink anything for about 3 years after diagnosis but now?  Love my wine!   :)


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#928004 Abnormal Screening Mammogram...worried

Posted by Gemini on 20 August 2014 - 10:44 AM

I would not get too worried about this and yes, how easy for me to say that, isn't it?   ;)   Mammography has a high rate of false positives, especially if your breast tissue is dense.  I know many women who have had this experience and it was nothing more than calcifications.  There are also a number of things that are benign in nature that will show up on one and you won't know until they do this further testing.  I am sorry you are going through this because I am sure it is a very scary thing to hear.  Deep breaths, deep breaths.......Get the other stuff done ASAP because you will be able to relax a bit more when they figure it all out.  But many women have that second call and it proves to be nothing serious. I would not lie to you.  :)

 

I still have to answer your thyroid post but my mother-in-law is here for a visit and I am busy.  I will post a response soon!


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#927444 How Do You Cope With This Frustrating Disease

Posted by Gemini on 14 August 2014 - 12:00 PM

You don't have to go to a doctor to be tested for insufficiency.  If you have a problem digesting fats, you will know it.  I always suggest taking OTC digestive enzymes because they help tremendously.  I have been gluten-free almost a decade and this year, stopped using them to see what would happen.  I was using them far less frequently than when first diagnosed.  Low and behold.......I don't need them anymore.  I am eating more foods than ever, a completely normal diet and everything goes through as it should, with no more issues eating fats!  This particular problem takes quite awhile to correct as fats as just so hard to digest.


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#927035 Gluten-Free Eggs

Posted by Gemini on 10 August 2014 - 04:40 PM

Very nice post, IrishHeart, and I couldn't agree more!    :)


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#926617 Gluten Free Hair Dye

Posted by Gemini on 06 August 2014 - 01:49 PM

I would imagine that most people do not get hair dye in their mouths because it wouldn't be any potential gluten in it that would worry me.  Hydrogen peroxide is not something to

ever get in your mouth and the other chemicals, if ingested, might land you in the ER or placing a call to the poison center.  So, if people think they are being glutened by their hair dye without landing in the ER, I think the odds of a pole shift are much greater than being glutened from it.  If you are ingesting enough of a wheat filled hair dye to feel sick with celiac symptoms, it is more likely from the chemicals and I would stop doing that or go to the hospital.

 

The second issue is that any gluten component from a shampoo or hair dye might be from tocopherols. Here is some reading on that subject....http://www.glutenfre...wheat-germ-oil/.  Tricia Thompson is a very trusted source!


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