Need Some Help From The Experts

[naturegirl]

Hello all,

I've been reading the incredible wealth of information on this site for a few months but have not posted before now. I wanted to ask for some feedback/ideas/advice...

As a child, I had recurring coughs, colds, ear infections (including several burst ear drums). This all cleared up once my mum took me off dairy. I was always thin (although tall) even though I ate a lot.

I have had severe gynecological and chronic bladder issues for most of my life which started when I was a young girl. I have also had bloating, flatulence and digestive issues for most of my life. I have had acne and painful periods since puberty (now in my early 30's). I have also had some low-immune system symptoms: frequent swollen glands, feeling like I am getting sick, low energy, brain fog...

When I came to live in the USA, in August 2007, my digestive issues worsened. For around 8 months, I had diarrhoea up to 10 times a day and with this extreme bloating/flatulence and pain around the 'ileo-cecal valve' (not sure it is that though). The diarrhoea stopped after receiving acupuncture and chinese herbs but the pain/swelling in the ileo-cecal valve area remains to this day.

In July 2009, I did the Enterolab analysis:

Fecal Anti-gliadin IgA: 18

Fecal Anti-tissue Transglutaminase IgA: 13

Quantitative Microscopic Fecal Fat Scroe: 558

Fecal Anti-casein IgA: 7

HLA-DQB1 Molecular analysis, Allele 1: 0202

HLA-DQB1 Molecular analysis, Allele 2: 0202

Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

(eggs, yeast and soy were all <6, i.e. negative)

I had been on a mostly gluten-free diet for around a year before doing the test but went 100% gluten free in July 2009. The gluten free diet seemed to help with my bloating a LOT. Around the same time, I had a Mirena hormonal IUD placed. At the time, I had what seemed like food poisoining and was sick in bed for ~ 3 days. Since then, I have regularly had the exact same symptoms develop and in a similar way. I have not been able to figure out what could be causing them. I have now had the Mirena IUD taken out, as I wanted to rule out that this was not the cause. It has been out for 3 months, and although the frequency of these 'reactions' has decreased they still occur regularly (like today).

They often come on after eating, or in the morning. I feel nauseous, weak, have muscle pains, a headache (at the top of my head), feel extremely sleepy (to the point that it would be dangerous to drive), lose my appetite, have a swollen belly, bloating, flatulence, loose stools (sometimes diarrhoea), painful intestines, sore/hoarse throat, swollen glands (and sometimes other lymph nodes), often look a bit 'puffy' and red. The first time that this happened it lasted 3 days and I was so weak that I could not even sit up in bed. Since then, most times it has not lasted more than 24 hours but it has stopped me from working several times and is quite debilitating considering that I am otherwise a healthy 31 year-old. It has happened as much as once a week. I have tried to figure out what food or substance could be the culprit but so far have not found anything. On the one hand, I think that the gluten and dairy free diet helps me and yet on the other, I never had anything so debilitating before.

Sorry that this is so long!!! One more thing. I only had a large amount of gluten by mistake once, in the past 10 months. I had barley and my stomach swelled up and I had EXTREME

My questions:

1) Can going gluten free make you more sensitive to other foods?

2) Does anyone have similar symptoms?

3) I do not think that I am celiac but

[Mari]

HLA-DQB1 Molecular analysis, Allele 1: 0202

HLA-DQB1 Molecular analysis, Allele 2: 0202

Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

(eggs, yeast and soy were all <6, i.e. negative)

My questions:

1) Can going gluten free make you more sensitive to other foods?

2) Does anyone have similar symptoms?

3) I do not think that I am celiac but

[ravenwoodglass]

Are you taking any medications or supplements and if so have you checked to be certain they are gluten free? If not you need to do so.

It is not uncommon for other intolerances to come to the forefront after we have eliminated gluten, soy and casien (milk protein) being common. You may want to try eliminating those and see if it helps.

Also make sure you are eating a whole foods unprocessed diet as much as is possible to avoid cross contamination issues. IF you have a Wegmans near by shop there, they label all their gluten-free items. It makes it easier. You also need to have a seperate toaster and to replace scratched or wooden cooking utensils and pans. Keep in mind also that baking with gluten flours for others can give us problems. It takes as long as two days for the flour that gets in the air to settle and when we breathe it in it makes it's way into our system and can cause the antibody reaction to flare.

[naturegirl]

You have inherited 2 main celiac alleles/markers DQ b 202 and 202 which put you at very high risk for developing celiac disease and since you have 2 main celiac markers the disease may be more severe. You may think you have problems now but unless you strictly avoid gluten in food and probably in your environment too, you will continue to get worse. Many people go through a period of denial but once we realize the positive aspects of this information - that we can get well - we give up gluten. We are not defective in any way but because of what we inherited gluten poisons us. I'm also DQ2/DQ2 and it a wonder that I was able to survive until I was 70 when I found out I was gluten sensitive.

Hello Mari,

Thanks a lot for your input. Yes, I am already very committed to avoiding gluten and have been aiming to be 100% gluten free for almost one year. It has affected me from my environment at times (e.g. having gluten free pizza in a pizza restaurant where they are careful about contamination but there is wheat flour in the air!). I was more wondering whether it is likely that I am celiac (vs. gluten intolerant) given my alleles/markers? Thanks.

[naturegirl]

Are you taking any medications or supplements and if so have you checked to be certain they are gluten free? If not you need to do so.

It is not uncommon for other intolerances to come to the forefront after we have eliminated gluten, soy and casien (milk protein) being common. You may want to try eliminating those and see if it helps.

Also make sure you are eating a whole foods unprocessed diet as much as is possible to avoid cross contamination issues. IF you have a Wegmans near by shop there, they label all their gluten-free items. It makes it easier. You also need to have a seperate toaster and to replace scratched or wooden cooking utensils and pans. Keep in mind also that baking with gluten flours for others can give us problems. It takes as long as two days for the flour that gets in the air to settle and when we breathe it in it makes it's way into our system and can cause the antibody reaction to flare.

Thanks a lot for your advice. Yes, I've been careful with all the medications and supplements but not yet careful enough with the utensils and cookware (although toaster recently). I am in a house-share. I was wondering if it is OK to share plates, glassware, silverware... if it is washed properly? I imagine that it is mostly a problem with cast-iron or non-stick pans, anything wooden, or plastic. Is that right?

Yes, I think that I my other intolerances are coming to the forefront, as you said. I am about to go on an elimination diet (just posted about that elsewhere), which I really hope will clear my current symptoms and clarify what I can eat while staying healthy. I am already off dairy. I don't have Wegmans. I am in Boulder, CO and usually go to Sunflower, Sprouts or Wholefoods (but that one is pricey!!!). Thanks again.