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S_J_L

How Long Have I Been A Celiac, And How Much Damage Have I Done?

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Hi,

I was always a healthy weight up until 12, then i became unbelievably skinny, except i didnt notice this at the time and put it down to puberty lol. However i have been quite badly constipated since 7or 8. I was really anemic at about 15 and had headaches and tiredness all the time. At 16 i started to have heart problems (fast, irregular) and was put on medication. One doctor said i was so thin that my heart was strained, another didnt know, and another said it was just a random thing that some people get.

I have also suffered depression off and on since 12, and am on medication. When i came to uni, in my first year i got so exhausted that i ended up in a&e alot, dropped a paper and thought about not coming back. I went to a dietician cos i was concerned about my weight, and she analysed my diet as being good, and was put on 'fortisip', a high calorie drink which they usually give to the dying people that cant eat lol. This, plus my normal diet didnt put any weight on me, and that was the end of it for awhile. Last year my immune system was so low, i had the flu bad twice. My tiredness got worse and still is, i have such a foggy head and when im tired it feels like im guna faint. I lost another 4kg, (5'8 and 103pounds) so went to another doctor who sent me to a GI specialist who did all these tests on me, including celiacs.

I just found out afew weeks ago that:

t-transglutaminase is 164

antiendomysial is positive

I had my biopsy a week ago and im waiting for results.

When do you think my celiac (if i have it) started?

Also how much damage has been done?

Thanks, Sarah.

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Hi Sarah, It is very hard to tell when exactly your celiac was triggered but it sounds like it has affected you since 7 or 8. Many of us start out with C as our bodies response to the drop in absorption, trying to draw everything out it can I guess. Many of the other things you mention are also likely celiac related and as such should resolve. No matter how much damage was done you stand a real good chance of complete recovery. Most do, although it can take time.

You should get some sublingual B12 as soon as you can, that will help with your energy levels. Also get a good multiple that is gluten-free.

The easiest way to heal fastest is to eat whole, unprocessed foods for a bit. Fresh fruit and veggies, rice, potatoes, meats, eggs, nuts etc. I would strongly advise you to drop dairy for at least a couple months also. You can add in processed stuff like Lay's chips, specialty gluten-free baked goods etc after you have healed a bit. You want to check the gluten statis of everything that goes into or onto your body also.

You have come to a great place for info and support, read as much as you can and ask any question you need to. Be sure also to check out the links on the home page for some good additional information. Do be sure that all your first degree relatives get tested, whether they think they have symptoms or not. Celiac can be really sneaky and disguise itself as arthritis, mood disorders, gallbladder and liver problems, skin disorders and much more.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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OK, thanks, good to know. Any other opinions?

ravenwood already said most of it....

Search the forums a bit, ask more questions and ... biopsies can be false negative because of the way they are sampled.

Going gluten-free is quite a change, its hard at first like learning to ride a bike but once you actually make it habit it's actually quite easy.

Search this forum for cross contamination (CC) and hidden gluten ... get back to basics and get healthy.

If you are in shared accomadation this will almost certainly prove the hardest problem ... as others tend to be careless ..


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Thanks, im flatting and cooking separate from my flat mates anyway cos ive been trying to put on weight lol

Even so you do share pans and utensils....or a dishwasher or dishcloth, towels etc.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Sarah, have you eliminated gluten from your diet yet? Since you have had your biopsy done, there is no point in waiting for the results before doing so. As gfp said, false negatives with biopsies are fairly common, and a negative biopsy cannot rule out celiac disease.

Your blood work was positive. Along with a positive diet response that would prove celiac disease, even without a biopsy.

Make sure you get a new toaster, as you absolutely cannot clean a toaster well enough to be safe. The same goes for plastic colanders that have been used for wheat pasta, wooden cooking spoons and cutting boards and scratched non-stick pots and pans. All of those need replacing I am afraid.

Also, you will need to replace any personal care products (shampoo, conditioner, lipstick, soap, lotion etc.) that contain gluten. Look for things like wheat germ oil and barley extract. In addition I know that where you are (I assume you are in Britain somewhere because of saying 'flat' instead of apartment, but of course, you might be in Australia) people with celiac disease are told that wheat starch is safe. But many people with celiac disease react badly to it, and I advise you not to eat anything with wheat starch, no matter what anybody says.

Depression is a VERY common symptom with celiac disease and might clear up on the gluten-free diet. So, you may be able to wean off your medication after starting the diet! Many people (especially doctors it seems) are unaware of the fact that gluten will not just affect the digestive system, but the brain and the nervous system as well. In fact, it can affect any body system, and the damaged villi is just one of many possible symptoms.

The same goes for your heart. You may not need that medication any more, either. You do need to be checked for nutritional deficiencies. Low potassium, low magnesium or low vitamin B12 could be causing your heart problems, as could low ferritin (iron) levels and low vitamin D! All of those deficiencies are very common in celiac disease.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Can makeup affect you even though it just goes on your face??

Some of us (me included) will get a rash (I get psoriasis and terrible itching) when anything containing gluten gets on my skin.

But will you ever touch your face during the day? Will you remember to wash your hands with soap every time afterwards, to make sure you don't eat anything after touching your gluten containing makeup? Do you ever lick your fingers, poke around in your teeth etc.? If you have anything with gluten on your hands and forget to wash them before touching your lips or food you eat, you will gluten yourself.

So, while you may not be somebody who obviously reacts to gluten applied to the skin, why take the risk? I feel much safer knowing that I don't have to worry about it, because everything I use is gluten-free.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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