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New, Feeling Great Now

SpikeMoore

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SpikeMoore Apprentice
SpikeMoore
Posted

Hello everyone

I'm new but have been reading for a couple of weeks. Had a negative blood test but for me the circumstantial evidence is significant so i will continue gluten free. I would like to ask for some input from you as you sound quite knowedgeable on the topic.

Briefly here's the history

itchy recurrent rashes on buttocks, legs, arms and back of neck. GP took a biopsy of one lesion (but I think you don't want to biopsy a lesion, but instead beside it) and it was inconclusive. he said DH was a possibility.

did some reading on DH and the link to celiac...got thinking about all of the years that I have been taking alka seltzer--won't go out without it in my purse, it is in every desk drawer at work etc. I have taken it for gas/cramps usually in the afternoons after my lunch of 2 bagels.

suspicious symptoms:

intermittent constipation/diarrhea,

chronic low grade abdominal discomfort,

low iron,

infertility (with possible endometriosis),

weight loss despite out eating husband (am 5'7" and 120),

easy bruising,

killer itchy rash starting in May until Nov, exacerbated by exercise) that was suspicous for DH in all aspects except lacking symmetry, each occurence about 10 days of intense itching and then resolved

family history: Irish heritage, mother died of unknown liver condition, two of her siblings with juv diabetes and a first cousin with Downs.

Ok, so I went gluten free for 3 weeks. Noticed after 4 days that something was missing--gut discomfort! I hadn't felt like this since I could remember. I've added a couple of pounds, am sleeping better, bruising is gone, iron levels improved, no rashes since, bowel symptoms better and I feel great. Have been gluten free 2 weeks since blood work again.

Ate wheat 5 days prior to blood test but was only gluten free for 3-4 week prior anyway. GP said that blood work was neg (except H pylori inclonclusive), so I don't have celiac. I don't agree necessarily and am going to stay gluten free anyway because I feel great.

What do you experts think?

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mn farm gal Apprentice
mn farm gal
Posted

I am so glad you are feeling better! I personally think the diet is the way to tell in the long run but if you have noticed a difference I would keep the diet for life.

My sisuation is simular to yours, and then tried the diet and seen major changes in just a few days. I got to feel my legs again after not much feeling for 5 months. That was the first major change that was so noticable right away because you just walk and carry yourself differently when you don't know if half of you are "gone".

Good luck to you.

Sophiekins Rookie
Sophiekins
Posted

Five days glutened after being gluten-free for four weeks will not be enough to provide positive bloodwork.

I would say, from what you've described, that gluten-free is healthy for you, regardless of whether you are celiac or not. If you want to know "for certain", your next step is to stay gluten-free for three or four months, and then do a gluten challenge. . .if your symptoms return (and bear in mind it can take some time), you will know. You can also, if you like, go back onto gluten for six months (and I mean four slices of bread a day, minimum, every day, for four to six months) and ask your Dr to retest at the end of this period. If you start this now, it may be less painful than if you go gluten-free for a few months first. It is really up to you at this point, whether you think a doctor's diagnosis will make it easier for you to stay gluten-free (or if you are in Canada - I strongly recommend a positive Dr. diagnosis if you are low-income, as this will enable you to claim a tax-credit towards your gluten-free groceries).

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Welcome, Spike!

My situation is very similar (practially identical!) to yours, except my rash WAS symmetrical and it was on my arms. Thank heavens for the internet (and this board)!

A word of caution about an official MD diagnosis: some of the members of this board have been denied life insurance and/or health insurance because of an official diagnosis of celiac disease.

SpikeMoore Apprentice
SpikeMoore
Posted
  • Author

Thank you for your replies. It certainly is very interesting to know that others have such similar situations. I'm 36 years old and haven't totally given up on having a baby. Anyone have any sucess after going gluten free?

Am currently on the pill to control a type of ovarian cyst from endometriosis. Once it is surgically removed in the spring, I will stop the pill and I hope that the endometriosis will subside. My theory is that the chronic inflammation in the abdomen from the gluten reaction contributes to endometriosis. I will be very interested to see what happens even if I don't have a baby.

Thanks again and Merry Christmas!

PS what are you stuffing the turkey with? I know I won't be using the gluten free bread I attempted to make today--it turned into a glob of glue. I think I'll try some sort of rice concoction.

Looking for answers Contributor
Looking for answers
Posted

PS what are you stuffing the turkey with? I know I won't be using the gluten free bread I attempted to make today--it turned into a glob of glue. I think I'll try some sort of rice concoction.

RiceGuy Collaborator
RiceGuy
Posted

Whenever someone asks what to do for gluten-free stuffing, I think of popcorn. Although I haven't tried, I imagine it could be sorta crushed up a bit in a blender, and used just like bread crumbs. Puffed corn, millet, rice, etc also sound like they could work. Anyone ever try these?

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Ursa Major Collaborator
Ursa Major
Posted

Spike, Sophie is right, your bloodwork is quite possibly a false negative. After being gluten-free for four weeks, your intestine might have healed enough to not have enough antibodies to come up positive, even after eating gluten for a few days.

There are quite a few women here who were unable to conceive until they eliminated gluten. So, your chances of becoming pregnant are definitely much better being gluten-free. And I agree with you, that endometriosis can be a result of celiac disease. I hope it works out for you!

SillyBoo Newbie
SillyBoo
Posted

I make my own gluten-free cornbread, cut it up into cubes, then add celery, onions, apples, pecans, and tons of sage, thyme, and marjoram. This is what I made even before I had any clue about having celiac. My family and friends love it!

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