Jump to content

Follow Us:  Twitter Facebook RSS Feed            

   arrowShare this page:

   Get email alerts  Subscribe to FREE Celiac.com email alerts

Celiac.com Sponsor:                                    


Member Since 17 Apr 2004
Offline Last Active Today, 04:10 AM

#908803 Over 25 Years Of Chasing A Diagnosis, Please Help, Elevated Ttg Iga

Posted by on 13 March 2014 - 03:11 AM

Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in? I lasted six days, I felt like I was dying. My eyes were burning and black and red underneath with swelling, I looked like death. My husband is traveling and I couldn't take care of our five year old. Two days ago I needed a break, I went off gluten again. I just couldn't take it anymore. Besides a massive headache when I woke this morning (I get neck headaches due to two slight herniated disks in my neck and slight arthritis), I felt better today with more energy and more clear then I ever had. I ate gluten free all day again today, I never felt so FREE! Tomorrow it all comes to an end, my husband yelled at me and told me I better listen to the doctor and eat my gluten. I have cried so many times today that I have to start ingesting again. Now being off gluten twice in the past few weeks and going back on has convinced me gluten is 100% poisin to me. No matter what my test results may be, there is in no way, shape or form I will ever be ingesting gluten ever again. 6 more days of gluten and then the rest of my life can begin! I live in NY and the thought of a NY bagel used to get me so excited. Today the thought of it makes me ill. That is so crazy because bagels were my favorite foods in the world. So tomorrow, wish me luck, what should I eat? I can't wait till my husbands home so I can roll up in a ball and wait out the rest of my time.

Sorry you are suffering so much. Call your doctor's office this morning and ask to speak to a nurse about what is going on with your symptoms. Your doctor may tell you to stop the challenge. Reactions after stopping gluten even for a short time and then adding it back in can be severe and are an important part of the diagnosis process. Your doctor may even give you a diagnosis based on that reaction and your blood test results.

  • 1

#907765 Dr Office Called For Appointment To Discuss Results. Bad News ?

Posted by on 03 March 2014 - 03:27 AM

thank you for your answer.. Is this regardless of the symptoms ?

Gene testing can not fully rule celiac in or out. There are folks with the 2 most common genes who don't have celiac and folks without those genes that do.

It doesn't look like your doctor did a full celiac panel on you. Did they test for your total IGA? If you have low IGA then any IGA testing is worthless.

If your testing is finished for celiac then your next step is giving the diet a strict try for at least a couple months to see if the diet helps. Sometimes our body knows answers that the tests don't.

  • 1

#906582 Bad Doctor?

Posted by on 19 February 2014 - 02:32 PM

What a horrible excuse for a doctor. As others have stated we have all had too many experiences like that. My worst was the neuro that found my brain lesions. After a spinal tap confirmed that I didn't have MS after all he stated that the lesions meant nothing. I just wanted to be sick.

I think we all need voodoo dolls. After all we can't really do anything to them since there are 2 places most celiacs really don't want to go. One is a hospital. The other is jail...

  • 1

#903347 ~So Confused! Help Me Understand! Dr. Saying My Ms Isn't Ms It...

Posted by on 21 January 2014 - 04:15 AM

You could ask your doctor to redo the lumbar puncture. If you don't have the debris found with MS that is pretty conclusive that what you are dealing with is not MS.

I was thought to have MS until my neuro did the puncture. Then the clueless guy told me that the brain lesions I had meant nothing and I just wanted to be sick!  I also had false negative blood tests (the older tests not the newer ones). It wasn't until 2 years after celiac diagnosis when I had been seeing my MS symptoms resolving that some research showed me that the lesions we get with gluten ataxia are very similiar to the lesions seen in MS.

I have to be very strict but within 6 months gluten free I was able to walk without canes and my aphasia improved. Nervous system recovery can take much longer than gut recovery.

I should note that my neuro symptoms first appeared at a very young age so I had years and years of damage to repair. I did not develop GI symptoms until I was in my late 30's but had the neuro impact and DH from childhood. I still wonder if those of us who have more neuro impact than gut impact are more likely to show false negatives with blood work and biopsy. I will likely not recover any more than I have in the last 11 or so years but at least I can walk and talk normally now, unless I am glutened.

  • 1

#902619 Enterolab Results: Positive

Posted by on 14 January 2014 - 04:40 AM

How did your body respond to being gluten free and how has it responded to the challenge? IMHO that is the most important thing to which you should be paying attention. While it can be helpful to get a firm diagnosis if the diet is helping you should stick with it after all your testing is finished no matter what the results.

  • 1

#902618 Grrrr Gene Testing-Results Not What I Expected

Posted by on 14 January 2014 - 04:29 AM

Not all celiacs have DQ1 or DQ2.  I myself am a firmly diagnosed celiac who is a double DQ9 and was close to death by the time I was diagnosed.  I have a family member who was diagnosed by both blood test and biopsy who recovered on the diet but then was gene tested a few years later and told they were not celiac because they also didn't  have DQ2 or DQ8. There is still much to learn about genes and if you have had some positive blood work that has gone into normal ranges and you have seen relief on the diet IMHO you are celiac. Continue healing and don't worry about what label under which you fall.

  • 1

#900898 Does Reducing Gluten But Not Eliminating Provide Benefits?

Posted by on 29 December 2013 - 12:15 PM

Welcome to the board. It would be a good idea to ask your doctor to do a celiac panel before you go gluten free. If you are celiac and later on decide you want to be tested if you are already gluten free you would need to do a challenge. If someone needs the diet that challenge can be pretty miserable.

If you are celiac you are producing antibodies as a reaction to gluten. Even a small amount will cause the antibody reaction so you do need to be strict.

It can take some getting used to the diet especially as far as eating outside your home goes but the trade off of good health is well worth the hassle.

  • 2

#895532 Question About Genetic Testing

Posted by on 12 November 2013 - 06:42 AM

We all need to keep in mind that genetic research is really in it's infancy. There is a lot we don't know. Until they start doing genetic testing on every celiac diagnosed there will remain much to learn. I am a double DQ9 firmly diagnosed celiac. I am not alone. I don't have much time so only can provide one link. Here it is.




Evidence that HLA-DQ9 confers risk to celiac disease by presence of DQ9-restricted gluten-specific T cells. 

There are more peer reviewed journal articles out there if one wants to research further.

  • 1

#890517 Funny Ridges Or Dents On Nails

Posted by on 02 October 2013 - 12:14 PM

I have not seen anyone! I see my family Dr. thursday I cannot just make an appt. with any Dr. I need a referral from my Dr. He had my toe nail sent out So hopefully soon I will have answers !!!

I hope you hear from the office soon and they have some answers. It sounds like it would be pretty uncomfortable.

  • 1

#889847 Yesterday

Posted by on 27 September 2013 - 02:02 AM

It may have been a delayed reaction from the Taco Bell that you recently ate. For some of us our reactions can be delayed by days so it isn't always the last thing we ate that we are reacting to.

  • 1

#889241 Does Dh Ever Go Away?

Posted by on 21 September 2013 - 10:05 AM

My DH did clear up completely. It did take awhile and I found I had to be really strict with the diet and I also eliminated iodine. I made sure that all my toiletries and shampoos were gluten free and used a free and clear detergent.

The first year or two into the diet a DH outbreak was the first indication that I had been glutened. Within hours of exposure I would feel the rash starting. After those first couple years the time from accidental exposure got longer and longer. It is now my last symptom, if I break out at all, and the rash is a single tiny spot.

  • 1

#885355 Literally Too Tired To Wait Any Longer - Help?

Posted by on 22 August 2013 - 01:31 PM

Welcome to the board. Your story is all to famiiar to many of us.

If I remember correctly you can help with gluten-free foods in the UK if you have an 'official' diagnosis. I don't know how it works but if that is vital to you then do stay on gluten until all your testing is complete

 If you can ask to be put on a cancelation list for the biopsy. Then if someone else cancels their appointment at the last minute the doctor can slide you in.  You could also try asking the doctor if a return to negative on the blood work (if that is positive) along with resolution of symptoms on the diet would be enough to diagnose. Since they won't biopsy if the blood work is negative and the blood work is already drawn you could then start the diet right away.

There can be false negatives with both blood and biopsy so you do need to give the diet a strict shot after testing is done no matter what the results.

  • 1

#880883 Gluten Withdrawal: How Do You Function?

Posted by on 24 July 2013 - 02:53 AM

If you have sick days or vacation time you can take you might consider doing so. If not take the advice above and try to rest as much as you can while going through the withdrawl. Remind yourself often that it is a temporary thing and that it will end. Be easy on yourself and let the dust bunnies wait or if you have family try to get them to pitch in on household chores during that time.

Withdrawl is tough but it does end. The one good thing about withdrawl is that it is a clear sign that you need to be gluten free whether testing shows positive or not.

  • 1

#879098 Biopsy Results

Posted by on 11 July 2013 - 02:55 PM

The neurological and skin can take a while to clear. You might want to limit iodine for a short time to help your skin clear faster. Do be sure to add it back in after your lesions have resolved. Sublingual B12 seemed to help my neuro issues improve but it still took some time. IMHO you should give yourself at least a couple months gluten free before worrying that something else might be going on. If those issues get worse or you get more neuro issues then you would need to talk to your doctor.

It is good to hear you are already feeling better. You may find the GI gives you an official diagnosis based on your recovery gluten free combined with your reaction to the challenge.

I hope you continue to improve quickly but you may need to be patient with some issues.

  • 1

#878966 Is Gs Really In Our Heads?

Posted by on 11 July 2013 - 02:27 AM

Well for me it was at least partially in my head.....I have the MRI scans showing brain lesions to prove it. :wacko:

  • 1