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+dna Marker For Celiac, No Serum And No Sign Of Celiac In Biopsy 1 Week Back On Wheat And I Am Bloated, Gaining Weight, Have Nasea And "hot" Flashes?

jennifervan

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jennifervan Apprentice
jennifervan
Posted

"hot flashes" and I am only 33.

What do you think?

I am so confused. I was diagnosed last year with the gentic marker.

But after a endoscope and biopsy my stomach doctor said I have NO signs of celiac disease or ever having it. He was adament, even when I kept telling him I thought I did. He is an excellent Dr.. He really knows his stuff.

I know I can have the genetic marker without actually having celiac. So, I started eating wheat a week ago. I have been feeling "full" and really bloated. I have been gaining wieght. I don't get diariah... I have been peeing a lot. All of these symptoms started this past week.

What should I do? If I have no signs of it than am I just intolerant? Could that lead to Celiac?

I am usually very anemic. I have osteoperosis. I had a baby with a neural tube deficit. I was losing my hair until 6 months ago. I have mostly been gluten free for 1 year.

???????????????????

Thanks for your help,

Jennifer

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Lisa Mentor
Lisa
Posted

Jennifer:

Thank you for checking in again. It seems like it's been a long time since you have been here, or perhaps never posted much.

I had hot flashes when I was 35, and perhaps that may be young, but not unusual. You could be staring Peri menopause. My Peri-symptoms lasted about 10 years.

If you feel uncomfortable about introducing gluten into you diet and if you feel a difference in you system, simply avoid it.

Your gut is your second brain and it can tell you a great deal of things is you just listen.

You may have a gluten allergy and feeling the effects of what you have been eating.

The bottom line is, if it makes you feel bad, stop eating it.

I hope that this was helpful. :)

Nancym Enthusiast
Nancym
Posted
I have mostly been gluten free for 1 year.

Were you gluten-free during or before your testing? That'll skew the testing for sure.

I'd say you're definitely gluten sensitive, if not celiac.

jennifervan Apprentice
jennifervan
Posted
  • Author

Yes I was gluten free for several months before the testing. Also, at the endoscopy my Doctor was suprised to find my stomach empty. I usually have a slow stomach (gastroparesis).

I guess the answer to my question is pretty obvious. I just don't know if I am having a reaction to eating gluten because it has been a while since I have eaten gluten.

I had not had the hot flashes since I before I was gluten-free. I cannot believe that just after one week of gluten I am getting these symptoms. Maybe it is just being "hot" or feverish with the nasea.

Jennifer

2Boys4Me Enthusiast
2Boys4Me
Posted

I'm a bit confused.

Your signature says you were diagnosed with celiac in 2005, so when was the biopsy you're talking about? If it was a follow-up biopsy and there are no signs of celiac, then that's great. You're doing well on the diet, but you need to stay on the diet if you've been diagnosed with celiac.

At least, that's my interpretation. Maybe I'm not understanding the chain of events.

tarnalberry Community Regular
tarnalberry
Posted

In a really ambiguous situation, with other things going on, I would personally repeat the dietary test a few times. Given that I would suggest staying on the gluten-free diet for a month each time between challenges, this could take a few months, and not everyone feels comfortable with this sort of testing; it's certainly not without risks. But the end result is the same - if hitting yourself with a hammer hurts, don't do it; if eating gluten hurts, don't do it. You don't need to hit yourself with a hammer to be healthy, and you certainly don't need to eat gluten to be healthy.

jennifervan Apprentice
jennifervan
Posted
  • Author

Sorry to be so confusing.

This is what happend:

I had IBS, Barrett's syndrome, and gastroparesis 2003-2004

Problems with losing hair and gaining wieght, and being tired. So, my stomach doctor took a blood test and told me I had the genetic marker for Celiac 12/05.

I went gluten free immediately.

I had an endoscopy done for my Barrett's syndrome. At the same time my Doctor did serum and biopsy- which turned out negative. This was sometime last spring. When I came out of the endoscopy my doctor told me that everything looked good except for my Barrett's. I was to go in for an follow-up and never did till last week (I know this was not smart but we have had a busy year).

It was at this appointment last week (after I had been gluten free almost 1 year, with some bouts of cheating) that my doctor told me I was definately NOT celiac based on the endoscopy in the spring.

Jennifer

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2Boys4Me Enthusiast
2Boys4Me
Posted

Well, I suppose that since you went gluten-free in December that by spring any celiac damage could have been spotty at best since the healing starts immediately upon going gluten-free. If they only took a couple of samples that would explain the so-called negative biopsy. Many people on this board will say that a biopsy confirms celiac but never rules it out. It's entirely possible that they missed the damaged areas.

Tarnalberry makes an excellent point. If it feels bad, don't do it.

tarnalberry Community Regular
tarnalberry
Posted

a biopsy six months after going gluten free to look for damage in order to get a diagnosis of celiac disease is *pointless*. you've been healing that whole time.

/facepalm

mellajane Explorer
mellajane
Posted

I have been wheat and gluten free for three years now... Originally my symptoms were hot flashes, nausea all the time. When I completley stopped anything that I cold possibly think was bad I stopped it. My symptoms improved dramatically.This is such a hard lifestyle but it is so worth it.I have been sick since I was 7. I am now 30 years old. I have been shot down by dr.s for three years saying I do not have celiac.It is the only thing that has ever worked for me. Thats enough right there Dr. or no Dr.When I get sick it is very sick. I usually vomit and of course and dry heave for 2 to 3 days...I beleive I am allergic to wheat not so much gluten but I do avoid both. When researching I realized the symptoms for wheat are a little different than a gluten allergy. Stick with this diet all in all it will save your life. Good Luck

jerseyangel Proficient
jerseyangel
Posted

I had symptoms for years before being diagnosed. The earliest symptoms were nausea, lightheadedness and hot flashes. I also gained weight easily, and always looked bloated. This began in my early 30's.

I would be hot most of the time, worse with the nausea. I would get a burning in my face, which made the skin hot to the touch.

This went on for years--doctors always blamed something else. I was also anemic.

I think that your biopsy was negative because you were gluten-free for 6 months. That is enough time for the intestine to begin to heal (although you still might have symptoms).

Listen to your body, and if living gluten-free makes you feel better--go with that.

Rebecca47 Contributor
Rebecca47
Posted

Hi

when I accidently gluten myself I have night sweats or hot flashes in the day, I look 6 months pregnant, and and gassy, constipated. Many different things I just feel lousy for a day or so depends.

So my point is like everone says if it makes you sick don't eat it.

i really hope you get the answers you need or want ;)

I hope you feel better soon.

Ursa Major Collaborator
Ursa Major
Posted

Anemia, osteoporosis, bloating and gas are some of the 'classic' celiac disease symptoms. The hot flashes fit too. Of course your biopsy was negative, after six months off gluten, it was entirely meaningless. You have the gene, you have the symptoms, and you feel better off gluten. Ignore your stupid doctor, who apparently is entirely ignorant when it comes to celiac disease, and eliminate gluten again immediately, before you get any sicker.

The neural tube deficit in your baby was likely caused by a lack of folic acid, due to not absorbing nutrients while you were pregnant. I am sure it was caused by celiac disease. If doctors weren't so clueless about celiac disease, that wouldn't have happened. I hope your baby is doing well.

4getgluten Rookie
4getgluten
Posted

Jennifer

jennifervan Apprentice
jennifervan
Posted
  • Author

Thank you. I can't believe all of the support I have here. It is good to know that others have the "hot flashes" as a symptom. That strengthens my decision to stop the gluten.

Also, my dh and I have been trying to conceive so I did not know if all of this was due to pregnancy or going back on wheat the past week. I will not know if I am pregnant for 5 more days. I think it must be really important to stop eating wheat now. I hope that I did not hurt the baby if I am pregnant.

I was just SO happy when he told me I did not have Celiac. I wanted to believe it...but my body is screaming for me to get back off the wheat.

Thanks again for all of your help. What you have told me has made a lot of sense and helped me to make a decision.

Jennifer

jerseyangel Proficient
jerseyangel
Posted

Hi Jennifer,

I'm glad it all makes sense to you :) Don't worry about eating gluten recently if you are indeed pregnant. I didn't know I had Celiac with both of my pregnancies, and my boys were just fine.

Best of luck :)

jennifervan Apprentice
jennifervan
Posted
  • Author

I just found out I am pregnant. I am excited but I am SO frustrated that I have been eating wheat for a couple of weeks...since my doctor told me I did not have celiac. Today my hair started falling out. I hope this is not a sign that I have damage or that I am not processing vitamins. :( I am going to see if I can get a serum test today and stop eating wheat now. I wonder if a serum test will work at this point. I don't trust him that I am not allergic.

Jennifer

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