Gluten Challenge

[corrinne]

HI All,

I am undergoing a gluten challenge and wondering if anyone has any advice. I don’t have a specific question but I’ve been impressed by the group’s knowledge and generosity, so I figured I would put my situation out there and see what happens.

Some background: 

My mother says I was horribly ill and underweight as a baby (when I was 18 months the pediatrician put me on a diet of bacon and eggs, which probably was a good idea, though I have since hated bacon and eggs my whole life). I always remember having a “bad” stomach and a huge (like legendary) appetite. But because of GI issues I started restricting food around age 15: first dairy, then meat, then coffee, then acids….etc.. Besides the main GI symptoms, I had: chronic anemia, rash on my buttocks, horrible canker sores, and things that seem like good health (low BP, very low cholesterol, low body temperature, normal weight and height) but some now seem like maybe celiac related.

 

I was diagnosed in 1994 (when I was 30 years old). I had been having terrible GI issues and also awful respiratory/allergies (repeated strep throat and bronchitis). Some blood work (now lost) made my GP suspect celiac and the gluten-free diet was a total miracle. After just a week I felt better and after a year I was like a new person. I elected not to have the biopsy because we didn’t see the need. After the gluten-free diet, most of these reversed (but low cholesterol still—dr’s are always amazed and say I’m going to live forever).

 

I was very healthy for many years, but a few years ago I started feeling bad again. I’ve had terrible bloating and burping, some vomiting, fatigue, low thyroid, and my allergies/asthma are worse again. I also had a broken ankle that wouldn’t heal and a very traumatic shoulder surgery. My GP wasn’t any help. I saw a naturopath who diagnosed H Pylori and a fungus (geotrichum). Her treatment helped, but still the GI symptoms persisted. So I changed GPs and got a new GI. The GI really wanted me to do a challenge, and it’s taken me 6 months to screw up the courage. Meantime I had the genetic test and it came back high risk (I’ll try to get more specific info when I see her next month). I have always been very strict on the gluten-free diet, so either I have refractory celiac or something else (or all these gluten-free foods are really not, which is possible too).

 

My biopsy is March 3. The GI told me to eat 4 pieces of bread per day for six weeks. I am trying to exceed that a bit, going for 7 weeks and a bit more gluten, just to be sure. The amazing thing is that so far I don’t feel too bad! I have traded bloating and burping for loose stools and farting (and a kind of general irritation of the GI tract).

So what are my questions: anything I need to be doing? Anything I should request of my doctor?  On a more frivolous note, perhaps we should have a betting pool about the results and give the money to celiac research (just kidding, but I come from a long line of compulsive gamblers and my partner is a statistician, so I can’t help thinking things like that).

Any thoughts are most welcome!

Corrinne

 

 

[ravenwoodglass]

Why is your doctor insisting on a gluten challenge? To me that makes no sense as you were already diagnosed and did quite well for a long time. That diagnosis should be in your medical records despite your not having the endo at that time.

IMHO instead of a challenge to re-diagnose you he should be rerunning a complete panel to see if you by chance have gluten sneaking in (some of us become more sensitive to small amounts after healing) and do an endo to rule out refractory celiac (rare) or other issues. 

Do read the Newbie thread at the top of the Coping section to make sure that you haven't missed anything that doctors don't think to tell us, like the need for a gluten eater to brush their teeth before we kiss them, as just one example. 

I hope you get some answers and are feeling better soon. 

[corrinne]

Thanks for your response! Believe me I thought the gluten challenge was ridiculous, but with all the attention on gluten now doctors never believe you unless you have a biopsy. I tried to get my old tests but all the records have been destroyed. I have had the ATTG serum test and it came back on the high end of norm (I think it was 7 where 1-7 is normal and over 10 is likely celiac). At the time (about 8 years ago) my terrible GP said that meant I didn't have celiac, and I argued with her about it. Later that day she called to say "I wrong wrong--don't eat gluten." She sent me for an endo (which came back normal) but at that time I did not want to do the challenge. I have also had the fecal SigA (last year) and it came back 6.4, which seems to be on the higher side of normal. The naturopath said that meant the celiac was well controlled (though she said she was 100% sure I had celiac).

 

So yes the challenge seems crazy but I guess a lot of people are misdiagnosed with celiac and it is just NCGS? I think my chances are small but if there is any chance it is not celiac the doctor wants to know to look for other things, and I will be soooo happy. I am getting to the point where I don't eat out and don't travel.  If it's not celiac life would be easier. 

 

I have been doing lots of reading (so much research has come out since when I was diagnosed!). Doctors don't seem to know much but people here do.My GI seems knowledgeable, but she really insisted on the challenge, so I finally agreed.  At first I thought that not feeling too bad on the challenge was a good sign, but now I think maybe it doesn't mean much? 

[nvsmom]

A positive tTG IgA is never NCGS.  95% of the time (unfortunately) a positive result is caused by celiac disease, the other 5% of the time it is caused by thyroiditis, diabetes, crohn's, colitis, chronic liver disease, or a serious infection.  You have hypothyroidism (Hashi's I assume - it is common among celiacs) so there is a chance that the thyroiditis is helping to elevate your tTG... note I say "helping" though.  

 

My guess is that you were correctly diagnosed but another health issue or accidental unknown glutenings, have caused a return of your symptoms - which sounds so much like what I experienced right down to the low BP and cholesterol.

 

The fecal tests aren't accepted as accurate by most celiac doctors so I would be wary of what it shows, but I do agree with your result this time.  

 

 My first piece of advice would be to recheck your thyroid.  It can cause fatigue, stomach problems, and slow healing.  Doctors do not always realize that their one treatment (usually T4 in the form of Synthroid) does not work for everybody.  My doctor declared me optimally treated when my TSH hit a number he was happy with but my symptoms had not changed so he said they were coincidental now.    When I changed to a medication with T3, I was pretty happy with how quickly I felt better.

 

Ask to recheck your TSH, it should be near a 1 regardless of what your normal lab range is. A 2 or 3 is often not good enough for those with a thyroid problem.  Check your Free T3 and free T4, both should be in the 50-75% range of your lab's normal reference range.  A "normal" but low FT3 can still make you feel hypo - it did for me.  Do NOT check the T4, T3, or total T4 or total T3.  Those won't help you know what is going on in your body.  The TPO Ab is also helpful.

 

As for your gluten challenge, make sure you are eating somewhere between 1/2-4 slices of bread per day (or equivalent), with 1-2 being a common recommendation.  When the biopsy is done, make sure they take at LEAST 6 samples. More is always better.  The biopsy can miss up to 20% of celiacs... That's 1 in 5.  You'll have to get your partner to use that info before bets are placed.  

 

This report has more info on the tests too: Open Original Shared Link

 

Not many people are misdiagnosed with celiac disease.  At the most, it is 1 in 20, and remember that those people have something wrong that caused the positive test results.  Those tests won't be positive for no reason.

 

Anyway, good luck with the biopsy.  Regardless of results I think you should probably stay gluten-free and possibly look into other health problems (thyroid) or other food sensitivities (corn and soy can make a few celiacs feel just as bad as gluten).  A food journal might help you figure out your GI problems.  Best wishes.  

[corrinne]

Thanks Nicole, That is all helpful. My thyroid is monitored regularly and is sometimes a bit low but ok I think. I was feeling well enough on the challenge, but today I've been feeling horrible. I have terrible sinus pain and cough as well as bad abdomen pain--actually my whole body is in pain!  I used to have such symptoms all the time but since begin gluten-free I haven't. Could just 3 weeks of eating gluten mess me up so much? I guess this is what I am trying to find out: what really happens on the gluten challenge? How will I know if I should quit? It seems crazy to make yourself sick just to get tested. I wonder about the permanent or long term effects of this, but I couldn't really find any studies about it. I figured the celiacs might have helpful anecdotal information.   

 

I noticed that you are Canadian. My doctor says once I get a biopsy confirmed celiac I can take a tax deduction for gluten-free food. do you do this? Still if I feel like this for 3 more weeks I don't think any tax deduction will be worth it. 

 

Thanks for your help! 

[nvsmom]

Actually, I just had the tTG IgA and EMA IgA tests run and they were positive. No other blood work was offered. I had been ill for decades, and had celiac disease in the family, so because i knew how specific those two tests are for celiac disease, when my doctor asked, I declined the biopsy. I felt there was no need. I went gluten-free and my tests slowly went to normal so I knew that the diagnosis was correct.

Besides, there was a waiting period of almost a year to see a gastro for celiac disease related matters .... Not worth it to me.

I have never claimed my tax deductions. Yes bread and granola bars cost more ($6.99 for a loaf of Udi's ) but I do not spend much extra on special gluten-free foods. Rice, potatoes, and yams are our main starch, and meat, veggies and fruit were already gluten-free. To be honest, any extra i spend on bread or Chex is more than made up by not ordering a pizza every week. We rarely eat out for safety reasons (maybe once or twice a year) so we save a lot of money that way.

Plus I have heard that one is more likely to be audited if you claim foods for deductions. This was three years ago that I heard this and I don't know if it has changed. Sounds like something revenue canada would do though, doesn't it?

[corrinne]

I thought I would report back in. I am in the last week of my gluten challenge, and I haven't been having horrible GI symptoms, though I certainly would prefer not to have farting and loose stools.Before the gluten challenge I had been having bad respiratory/immune issues (bronchitis, colds and flu) and during the challenge I got so sick with fever and cough--and  was finally dx'd with pneumonia. I was soooo sick and slept for like 10 days straight. Not sure if that is related to the challenge, but as I was at the clinic and obviously having immune issues and they wanted to run some other blood tests, I asked for a celiac panel. Everything was under the threshold (they didn't supply exact number, just they the test were negative. My serum IGA was 748 (when normal is under 426). So, not celiac but maybe NCGS?  Luckily as a result of this site and others, I new the PA was wrong when she said "You obviously have celiac--gluten is poisoning you! (What did people do before the internet when faced with such medical incompetence?) . In addition to the high serum IGA, I had I high red blood cell width, low blood sugar and borderline (3.2) TSH. Not sure what any of that means! 

 

I have my endoscopy next week. I have to say that I would thrilled to find I don't have celiac, and I think I am getting all the tests I need, but I wondered if I am missing anything. I also just wanted to report in, as I found reading about others struggling with diagnosis and challenge helped me to decide to finally do the challenge. I will be sure to report back the results! 

 

 

Corrinne